The Compass 2015

CHAPTER 1:NEUROSURGERY
PEDIATRIC
The Compass
Illustration by CHRISTIANE BEAUREGARD
Table of Contents
6
INTRODUCTION
FOREWORD: Dr. Vivek Mehta
PREFACE: Melissas Story
SPONSOR
Chapter 1: Diagnosis
13
SECTION 1.1: RECEIVING THE DIAGNOSIS
Questions to ask

Worksheet for your childs diagnosis
16
SECTION 1.2: UNDERSTANDING THE DIAGNOSIS

An overview of the brain and spinal cord

Tests and procedures

Whos who on the medical team

Common pediatric neurosurgical diagnoses
26 Achondroplasia
27
Arachnoid cyst
27
Arteriovenous malformations
28
Brain abscess
29
Cerebral aneurysms
30
Brain and spinal tumours
31
Cerebral palsy
33
Chiari malformations
34 Craniosynostosis
37 Epilepsy
39 Hydrocephalus
40
CSF shunts
43
Intracranial hemorrhage
44
Moyamoya disease
45
Spina bifida
46
Syringohydromyelia (syrinx)
47
Occult spinal dysraphisms (OSD)/tethered cord
The Compass
Chapter 2: Hospitalization & Surgery

53

SECTION 2.1: PREPARING FOR ADMISSION

Talk to your child
Pre-admission clinic (PAC) visit before surgery
Packing checklist
55

SECTION 2.2: VISUAL SCHEDULE

My neurosurgery operation at the Stollery Childrens Hospital
58

SECTION 2.3: HOSPITALIZATION

The day of your childs surgery
Pain and pain medications in hospital
Resources in hospital
Accommodations
63

SECTION 2.4: GOING HOME

Home care and follow-up
Wound care and complications
Common post-operative issues
Taking medications
Helpful hints
Preparing for outpatient clinic
68

SECTION 2.5: REHABILITATION

Glenrose rehabilitation
Orthotist directory
70

SECTION 2.6: PROFILES

Medical profile
Medic alert identification and jewelry
Hope stones
Chapter 3: Education & Assistance
79

SECTION 3.1: SCHOOL

Early education
School-age children
Effective communication with teachers
Inclusion
Advocacy resources for school and community
Information-sharing profile
89

SECTION 3.2: FINANCIAL ASSISTANCE

Government programs
Savings plans
Charities and associations
The Compass
Chapter 4: Therapy, Fun & Products

97

SECTION 4.1: COMPLEMENTARY THERAPY

Physiotherapy, occupational therapy and speech therapy
Complementary therapy
99

SECTION 4.2: FUN

Accessible sports and programs
Funding for sports
Bike program
Special Edmonton summer events
Camp and adventure trips
Travel insurance
105

SECTION 4.3: SPECIALIZED PRODUCTS

Clothing, shoes and specialized products
Mom tips
This and that
Jack-of-all-trades
Chapter 5: Stories of Coping

113

SECTION 5.1: GRIEVING

The five stages of grief
Resources
Respite care
116

SECTION 5.2: REAL-LIFE STORIES

Stories from parents
Sibling support information and stories
Stories from family and friends
Stories of bereavement
Chapter 6: Additional Resources
The Compass
149
SECTION 6.1: ACKNOWLEDGEMENTS
152
SECTION 6.2: GLOSSARY OF TERMS
153
SECTION 6.3: OLIVIAS JOURNEY
168
SECTION 6.4: MAPS OF THE STOLLERY CHILDRENS HOSPITAL
Introduction
WHY WE WROTE THIS BOOK
When we started this journey with our children, we

were all overwhelmed by the amount of information
we received: pamphlets, handouts, websites, notes
and medical letters. Trying to sort through it was
exhausting and, in most cases, unnecessary. As we
met to discuss our journeys as parents and caregivers,
we realized that we all had a similar experience. Why
wasnt the process streamlined? Why did it feel too
large to tackle? Wouldnt it be nice if there was a
one-stop shop where parents could go to find the
information they need?
Wanting the parents and caregivers who came
after us to have a different experience, we decided to
write this book. We hope it will reassure you that this
path has been travelled by others before, and you are
not alone. We share with you the wisdom from our
journeys and hope that this book - The Compass - will
help you navigate your path.
HOW THE COMPASS CAN GUIDE YOU
This book is not intended to replace the information

provided to you by the health care professionals
involved in your childs care. It is intended to be a
complementary guide to help you travel through
your childs medical journey. Our intent is to provide
medical and technical information about brain and
spinal cord injury and surgery with a combination of
straightforward language, personal stories and tangible
real-life resources that you can access. While the book
was written by parents in northern Alberta, and as such
has references to local businesses and resources, we
welcome families and caregivers of any child, in any
location, to use this book.
Understanding the basic information about your
childs condition, such as medical terminology, surgical
procedures and complementary therapies, will alleviate
some of the anxiety you may feel and will allow you to
focus on your child.
COFFEE STAINS AND DOG EARS
We have written and organized this book to follow you

step by step through your childs illness. Throughout
the book we have added real-world tips that help
families. This book was designed not only as a resource
guide that provides you with information, but also
as a workbook to help you take notes and keep your
information organized.
We hope that you will take The Compass to your
appointments, fill in the worksheets and store business
cards and brochures in it. Please write in the margins,
stuff a colouring book inside and dont be afraid of
coffee stains.
Ryan Girard
Authors:
Melissa Da Silva BScN, RN
Wendy Beaudoin NP, PhD
Melody Willier
Vivek Mehta MD, MSc, FRCSC
TEAM NEURO: (L-R) Melody Willier, Wendy Beaudoin and

Melissa Da Silva are raising neurosurgery kids with expertise
from their medical and personal networks.
The Compass
Introduction
Foreword
When your child is diagnosed with a brain or
spinal cord disorder, your family is forced into
a foreign world. Your new reality is filled with
many questions about your childs health and
future. Fear, hope and uncertainty are just a
few emotions that may inundate you.
Pediatric neurosurgery at the Stollery Childrens
Hospital is a surgical service that prides itself
on providing excellent clinical care. Our service
collaborates with many other specialists to ensure
that all the appropriate personnel are involved in
your childs care. The Neurosurgery Kids Fund
(NKF) is a charitable organization whose mandate
is to improve the journey our children and families
will undertake.
The Compass is the brainchild of mothers who
thought that a roadmap would help meet the needs
of their children. This document is designed to help
parents understand the language and medical jargon
theyll hear.
The Compass is also designed to help parents and
families navigate within the health care system, to advocate for their loved one and to deal
with the psychosocial aspects of a childs illness. It is a manual that will help families during
their journey and a testament to how a committed parent can improve our community.
Vivek Mehta MD, MSc, FRCSC
Pediatric Neurosurgeon
FOLLOW US at neurosurgerykids.com
FACEBOOK: facebook.com/neurosurgerykids
TWITTER: @neuro_kids
The Compass
Introduction
Preface
I remember it like it was yesterday sitting next
to my sons bassinet in the neonatal intensive
care unit and feeling so alone. Here in the
middle of a busy, loud room filled with nurses,
doctors, families and friends, I was by myself.
And I was scared.
Monika Melnychuk
Two days earlier, I delivered my second son by

emergency cesarean section. He was beautiful and he
was perfect, but he was also very, very sick. He had
suffered a hemorrhagic stroke and was now fighting a
life-threatening blood disorder.
Denial. How could this happen to me? I couldnt believe
this was my reality. It wasnt how I had planned it.
I dont remember the first few weeks. I was lost. I was
numb. Then, I was angry. I was angry that God had done
this to my son and to me. I was angry that the doctor had
waited too long to deliver him. I was angry at myself. Did
I do something wrong? Was this my punishment? There
were so many painful and irrational thoughts.
Even the most basic tasks were challenging. It was
difficult to get up in the mornings, though for many days,
getting up was all I could do. Weeks and months slowly
went by and my boy made it home. We were given the
you just have to wait and see speech. The waiting was
unbearable.
I entered into the next stage of grief: bargaining. I
was making deals with God at every turn. I offered it
all, including my own existence, in trade for my sons
health and recovery. I was desperate and depressed. I have always been an optimistic and outgoing
person, but I wasnt at this point. I entered into a dark, miserable place: crying spells, panic attacks
and massive weight loss. I became reclusive and sad. I feared I wouldnt be able to conquer these
emotions.
Seeking counsel, being honest and accepting help were some of the first steps in the right
direction the direction of healing and inner peace. My journey has led me back to a place where
I can smile, laugh, love and have peace. There are still hard times but there is always hope. This is
acceptance.
Our wish is for you to know that you are not alone and to know that there are others who have
felt your overwhelming fear. Take it one step at a time, have faith and always have hope.
Melissa Da Silva BScN, RN
The Compass
Introduction
Compass Sponsor
The Building Trades of Alberta Charitable Foundation is proud to partner with the
Neurosurgery Kids Fund and the Stollery Childrens Hospital Foundation in the
production of this book.
Monika Melnychuk
The Compass is about people helping people a philosophy that aligns perfectly with the
Building Trades of Alberta.
There is nothing more important than family. The Compass offers hope, direction and guidance
to the families and patients who are presented with neurosurgical diagnoses. This book gains its
strength from the people who have been on the journey before you, as they share their learning
and discoveries.
We look forward to continuing our partnership with the Neurosurgery Kids Fund and to
continuing to develop The Compass.
The Compass
Introduction
A Strong Foundation
The Stollery Childrens Hospital Foundation is committed to funding excellence.

Through collaboration with the Stollery Childrens Hospital, weve developed best
practices and medical advancements that impact not only our community and
patients, but children all around the globe. We are dreamers who take great pride
in constantly striving to improve the experiences of those who visit our hospital,
whether as a patient or in support of someone they love.
The business of magazines
10
The Compass is published for the The Neurosurgery

Kids Fund by Venture Publishing Inc.,
10259-105 Street, Edmonton, AB T5J 1E3
Tel: 780-990-0839, Fax: 780-425-4921,
Toll-free: 1-866-227-4276
circulation@venturepublishing.ca
Editors: Robbie Jeffrey, Mifi Purvis

Design: Andrea deBoer
Photography: Ryan Girard, Shona Nichols
Illustration: Christiane Beauregard, Steve Adams,
Monika Melnychuk, Peter Ryan, Caroline Hamel,
Robert Carter, Charles Burke
The Compass
CHAPTER 1:
Diagnosis
Illustration by STEVE ADAMS
Chapter 1: Diagnosis
13
SECTION 1.1: RECEIVING THE DIAGNOSIS
Questions to ask

Worksheet for your childs diagnosis
16
SECTION 1.2: UNDERSTANDING THE DIAGNOSIS




26 Achondroplasia
27
Arachnoid cyst
27
Arteriovenous malformations
28
Brain abscess
29
Cerebral aneurysms
30
Brain and spinal tumours
31
Cerebral palsy
33
Chiari malformations
34 Craniosynostosis
37 Epilepsy
39 Hydrocephalus
40
CSF shunts
43
Intracranial hemorrhage
44
Moyamoya disease
45
Spina bifida
46
Syringohydromyelia (syrinx)
47
Occult spinal dysraphisms (OSD)/tethered cord
CHAPTER 1:
Diagnosis
SECTION 1.1 RECEIVING THE DIAGNOSIS
Nothing can prepare you for hearing that your
child or loved one requires brain or spinal cord
surgery. The amount of pain, fear and suffering
this can cause is extraordinary. We know this
because we too have been in a room across
from a doctor, in complete disbelief and shock.
Take a deep breath. Cry, if you need to. Take another
deep breath.
We begin this resource book with information that
will help you understand your childs diagnosis.
Are you alone? Ask to call your partner or someone to
come be with you. If your spouse is unable to attend, put
them on speaker phone so they can hear the information
first-hand from the doctor and ask questions.
If your childs doctor presents or sketches out
diagrams, ask if you can have a copy or take pictures
with your phone. This always makes it easier to
explain to others. Request a copy of pertinent imaging
or lab work.
Turn to page 14 and fill in the blanks. You can
research the diagnosis more easily if you have accurate
information and spelling. Its also important for you
to get contact information. Ask everyone for a contact
card and place it in the card holder located at the back
of this book.
QUESTIONS TO ASK
In a stressful and emotional time, it is nearly
impossible to think of important questions.
Here are some that might assist you:
W
hat happens next? Ask for an
explanation about the process.
W
hen will this happen?
W
hat is the time frame?
W
hat did the scans show?
W
hat other tests are needed?
W
hat is the expected prognosis?
I s there anything else that I should ask?
I s there anyone else I should speak with
before I leave?
A
re there any other non-surgery options?
I f I have questions after I leave who
can I contact?
The Compass
13
Neurosurgical diagnosis worksheet

FOR YOUR CHILDS DIAGNOSIS
Diagnosis:
Planned procedure:
Alternative procedure:
Risks of surgery:
Risks of surgery:
TEST/PROCEDURE #1
TEST/PROCEDURE #2
Test name:
Test name:
Test date:
Test date:
MEDICATIONS
Name:
Name:
Purpose:
Purpose:
CONTACT INFORMATION/FOLLOW UP
Doctors name:
Doctors name:
Specialty/service:
Specialty/service:
Follow-up appointment:
Follow-up appointment:
EXTRA NOTES
14
The Compass
NOTES FROM MEDICAL TEAM:
The Compass
15
SECTION 1.2 UNDERSTANDING THE DIAGNOSIS

Lets be honest most of us have never really thought about the brain and spinal cord, except for the fact that we
have one and we need to protect it. When your child or loved one is diagnosed with a neurological condition that may
require neurosurgical intervention, it is helpful to understand the structure and functioning of the brain and spinal cord.
In this section we have included an overview of the anatomy of the brain and spinal cord, along with a few diagrams
to help you see what it looks like. A glossary of terms is located in chapter 6 for your reference.

THE BRAIN
The brain sits inside the skull and is surrounded by

a watery fluid called cerebral spinal fluid (CSF) that
provides nutrients to the brain and cushioning for
protection. There are two sides to the brain: the left
hemisphere and the right hemisphere. The hemispheres
are responsible for different things.
Corpus callosum is the part of the brain that allows

the right and left hemisphere to communicate with
each other.
PARIETAL LOBE
FRONTAL LOBE
MOTOR SPEECH
AREA OF BROCA
TEMPORAL LOBE
PONS
TOP VIEW
CEREBELLUM
BRAIN STEM
1.1 The human brain
16
Steve Adams
OCCIPITAL LOBE
The Compass
An Overview of the Brain and Spinal Cord
THE CEREBRUM
The cerebrum is the largest part of the brain and

has two hemispheres (left and right). The cerebrum
is extremely important as it interprets sensory input
from all body parts and controls body movements.
The cerebrum is responsible for movement, learning,
emotions, reasoning and memory. There are four lobes
THE FOUR LOBES OF THE BRAIN
The frontal lobe is the lobe of the brain that helps with
problem solving, judgment and decision making. This
is where our personality is formed. A small part of the
frontal lobe helps with speech and controls movement.
The frontal lobe is located behind the forehead.
The parietal lobes help us understand and interpret
information from our senses of taste, temperature, pain
and touch. This area also works with handwriting, math
skills, language and body position. The parietal lobe is
located behind the frontal lobe.
The temporal lobes are located in the temple area.
This part of the brain helps us understand what we
are hearing by processing information for speech
and language.
The occipital lobes, which are located at the back
of your head, deal with vision. The optic nerve carries
OTHER PARTS OF THE BRAIN
The cerebellum is at the base and the back of the

brain. It is responsible for coordination, balance and
motor functions such as limb and trunk movement, eye
movement and speech. The cerebellum also has input
into behavioural portions of the brain.
The hypothalamus is located deep within the
brain and is responsible for hunger, thirst and body
temperature. The hypothalamus also drives the
pituitary gland to release hormones to keep the
THE BRAIN STEM
Midbrain: This part of the brainstem is important

for some eye movements and houses the wires that
control movement as they travel from the brain to
the spinal cord.
Pons: This is the largest part of the brainstem
and controls some eye and facial movements and
sensation. It also has the very important job of
relaying information from one part of the brain to
other parts.
The Compass
that make up the cerebrum: frontal, temporal, parietal

and occipital lobes. It is important to note that the
movement on one side of the body is controlled by the
opposite side of brain. (For example, your right arm
and right leg movement is controlled by left side of
your brain.)
information to the occipital lobe of the brain where it

can make sense of it. The right optic nerve goes to the
left occipital lobe and the left optic nerve goes to the
right occipital lobe in a criss-cross.
There are special doctors at the Stollery called
neuro-ophthalmologists or ophthalmologists who
can assess the health of the eyes and the optic nerves.
If you are scheduled for an appointment, prepare to
be there for a while. The detailed examination can be
lengthy, so bring extra toys and supplies.
A bike helmet should fit properly
over the forehead above the brow.
It should not be pushed back.
Protect your frontal lobe!
endocrine system working correctly.

The amygdala is grey matter in the medial temporal
lobe and is important for emotional responses. It is part
of the limbic system.
The hippocampus is important for long-term memory.
It is also part of the limbic system like the amygdala and
is often targeted when treating seizures surgically.
The thalamus is a deep area of the brain that relays
both sensory and motor activity.
M
edulla oblongata: This is the part of the
brainstem that is closest to the spinal cord and
controls breathing, swallowing and heart rate.
We dont have to think about our heart beating or
our lungs working because the medulla oblongata
controls these involuntary functions.
17
WHAT ARE CRANIAL NERVES?
Cranial nerves are not like spinal nerves. The main

differentiating feature is the houses that send the signals
out to the nerves arise from the brain and spinal cord.
NERVE
NAME
FUNCTION
Cranial Nerve 1
Olfactory
Smells
Cranial Nerve 2
Optic
Vision
Cranial Nerve 3
Oculomotor
Eye movement
Cranial Nerve 4
Trochlear
Movement of the eyes
Cranial Nerve 5
Trigeminal
Sensation to your face and movement of

chewing muscles
Cranial Nerve 6
Abducent
Side-to-side movement of the eyes
Cranial Nerve 7
Facial
Movement of your face, tearing from

the lacrimal gland, taste from the front
of the tongue
Cranial Nerve 8
Auditory
Hearing and balance
Cranial Nerve 9
Glossopharyngeal
Controls the muscles for swallowing,

secretions for parotid gland, sensation to
part of the tongue and ear, taste from the
back of the tongue
Cranial Nerve 10
Vagus
Controls the muscles in the back of the

throat, helps make the abdominal organs
work properly, helps regulate breathing,
heart rate and blood pressure
Cranial Nerve 11
Accessory
Shoulder movement
Cranial Nerve 12
Hypoglossal
Supplies the muscle of the tongue
Reference:
Thelan, L.A., Urden, L.D., Lough, M.E., Stacey,
K.M. (1998). Neurologic Anatomy and Physiology.
Mosby Inc. Critical Care Nursing: Diagnosis and
Management (3rd edition) (pp 742-746).
18
The Compass
COVERING OF THE BRAIN
Three layers make up the covering of the brain; innermost is the pia mater, the middle layer is the arachnoid
and the outer layer is the dura mater. The toughest
layer is the dura mater. Below this layer is a space where
subdural collections such as fluid or blood may occur.
In the subdural space, children may occasionally
accumulate blood, cerebrospinal fluid or an infection.
Subdural hematomas (blood) often develop after a
SUBARACHNOID SPACE
traumatic event. Depending on the situation, these

bloody collections may be observed or may on occasion
need a surgical intervention (burr holes, craniotomy).
Subdural hygromas (cerebrospinal fluid) may also
occasionally need surgical treatment. Subdural
empyemas (infection) often need surgical drainage
coupled with antibiotic therapy.
SKULL
DURA MATER
ARACHNOID
PIA MATER
Charles Burke
CEREBRAL CORTEX
1.2 Covering of the brain
VENTRICULAR SYSTEM
If you have ever heard the surgeons talk about the

lakes of the brain then you have heard about ventricles.
Our brain is constantly producing a fluid called CSF,
or cerebrospinal fluid. CSF flows around the brain and
spine. A certain amount of fluid is reabsorbed by the
brain but the remaining CSF will travel through the
ventricular system to the fourth ventricle at the base of
the brain where it will exit.
In neurosurgery, it is not uncommon to see a disruption
to the balance between the amount of CSF that is
produced and the amount that is reabsorbed. There are
many things that can upset this balance, such as blood
clots, tumours or scar tissue. This disruption can lead to a
backup in the drainage system and lead to increased fluid
around the brain resulting in increased pressure.
Think about a sink with a slow-flowing tap and the
drainage pipe if the drainage pipe is clogged up, water
will either drain out very slowly or not at all. Since
the tap continues to run water, the sink will slowly fill
up. Unlike the sink that will just overflow, the brain
is contained and the fluid has no way to be released.
Therefore, pressure in the brain will occur.
The Compass
When the ventricular system gets backed up in

children, they can develop increased intracranial
pressure. Some of the symptoms of increased pressure
in the brain are:
In babies:
-A
bnormal increase in head circumference (size
of head)
-F
ull fontanelle (soft spot on top of baby head
is bulging)
-S
plit sutures (a gap that can be felt between the
skull bones)
- Sunsetting eyes (downward casting of eyes)
-P
oor feeding

- Irritability
In children:

- Headaches
-N
ausea and vomiting
-L
ethargy (wanting to sleep all the time and lack
of energy)
-U
ncoordinated walking or lack of balance
-V
isual changes
-P
roblems remembering
19
GREY AND WHITE MATTER: HOUSES AND TELEPHONE WIRES
GREY MATTER
THORACIC 7
LUMBAR 4
Charles Burke
CERVICAL 5
WHITE MATTER
1.3 Grey and white matter
muscles. The grey matter sends out tendrils like telephone

wires to different parts of the central nervous system.
White matter: This represents the telephone wires
that are coming from the houses, or grey matter. It
is best to think of the white matter as a coil of wires
that is transmitting information and signals up and
down the central nervous system. The white matter
is transmitting signals responsible for movement and
feeling, as well as regulating critical functions like
temperature, blood pressure and heart-rate signals.
These are the functions that happen automatically,
without you thinking about them. These signals travel
between the body and the brain via the white matter.
Steve Adams
The brain is made up of neurons that act like houses

where brain function is developed. You will often hear the
term grey matter when describing this part of the brain.
The brain is also made up of axons that act like telephone
wires and transmit information to and between the
neurons. This part of the brain is called white matter.
The spinal cord also has grey matter and white matter.
Different amounts of grey matter depend on the level of
the spinal cord.
Grey matter: This describes the neurons, which are like
the houses of the central nervous system. The grey matter
is important for directing the senses of the body (speech,
hearing, seeing, feeling, memory) and control of the
1.4 Grey and white matter
20
The Compass
SPINAL COLUMN
The spinal cord is the main pathway for information

connecting the brain and the rest of the body. The
human spinal cord is protected by the bony spinal
column, which is made up of small bones called
vertebrae.
There are 31 vertebrae: eight cervical, 12 thoracic, five

lumbar, five sacral and one coccygeal.
There are nerves that extend out from each section
of the spinal cord. Messages are passed from skin
receptors to the spinal cord by these nerves.
SKULL
ANTERIOR (FRONT)
CERVICAL VERTEBRAE
BODY
THORACIC VERTEBRAE
TRANSVERSE PROCESS
LUMBAR VERTEBRAE
SPINAL CANAL
POSTERIOR (BACK)
ANTERIOR
Charles Burke
SACRUM
SPINOUS PROCESS
POSTERIOR
1.5 Spinal cord
Spinal nerves are really important because they send

special signals with motor, sensory and autonomic
information from the body to the spinal cord allowing
them to communicate. Motor is movement. Sensory is
SPINAL CORD RECEIVES MESSAGE,
INTERPRETS IT AND SENDS MESSAGE
FOR A MOTOR RESPONSE NEED TO
MOVE HAND FROM HOT STOVE
SENSORY
MOTOR
GREY MATTER
1.6 Spinal nerves
The Compass
WHITE MATTER
vision, hearing, touch, taste and smell. Autonomic is the

involuntary actions like heart beat and breathing. These
things are essential to life but we dont have to think about
each breath we take because it happens automatically.
MESSAGE IS SENT
TO SPINAL CORD
SENSORY STIMULI HAND

IS PLACED ON A HOT STOVE
MESSAGE RECEIVED AT MUSCLE

FROM SPINAL CORD FOR MOTOR
RESPONSE HAND IS PULLED AWAY
Charles Burke
SPINAL NERVES/SPINAL CORD
21
Steve Adams
We all wish doctors could look at a child and know everything that is going on inside them. Since this is impossible, it
is necessary for doctors to order tests, scans and procedures. It may seem like doctors are bombarding you and your
child, but the more information the doctor and the team have, the better they are at making an accurate diagnosis and
recommending the best treatment.
Outside of the family room on 4H2 at the Stollery Childrens Hospital there are many handouts available that explain
tests and procedures. These sheets may also be helpful to you.
A child life specialist is available within the hospital to help prepare and support children during procedures or any
portion of their hospitalization. They establish a trusting relationship with your child and subsequently teach them
ways to cope. They offer play programs, teen support, one-on-one interaction, preparation and teaching for surgery or
procedures. The specialists can be reached at (780) 407-6818. Its worth the call.
1.7 External ventricular drain
ANGIOGRAM
BLOOD DRAW
AUDIOGRAM
BLOOD TRANSFUSIONS
An angiogram looks at circulation and the blood supply

in the brain and/or spine. The medical team uses x-ray
technology and a special dye to get information. Before
this procedure they sedate the child.
An audiogram is a hearing test that doctors use to

monitor hearing issues. In a soundproof room, children
listen for the sounds at varying levels, pressing a button
when they hear the sound.
BRAINSTEM AUDITORY EVOKED RESPONSE

This tests hearing when children are not able to use
standard testing. Technicians place electrodes on the childs
head and earphones on the ears. The test then measures
brain wave activity in response to clicks or certain tones.
22
The medical team often orders blood work, which can

provide valuable information about your childs health.
In the hospital, a technician or nurse will take blood
from your child for testing.
There are many components of blood that can be

transfused. Two common transfusions:
Packed red blood cells take three to four hours to
complete and are closely monitored for transfusion
reaction. When children have had a large blood loss
or are anemic from chemotherapy, the physician
can order a transfusion.
Platelets are important clotting factors. If a child
has low platelets he or she is at a higher risk for
bleeding.
The Compass
Tests and Procedures
COMPUTED TOMOGRAPHY (CT SCAN)
This is a complex computer-enhanced method of taking

x-ray pictures of the body. It is less sensitive or detailed
than the MRI scans. Neurosurgery prefers to use CT
scans to look at blood, bone and catheters. See page 41
for two photos comparing MRI and CT scan. (CTA is a
CT scan that focuses on the arteries.)
of a conventional MRI and without putting your child

to sleep. For example, in Edmonton, they can use a
FISP sequence or fast head MRI (requiring less than 30
seconds) getting a quick look at the ventricular system
or fluid for certain children. This quick scan can be used
to determine if there is a change in the size of ventricles
for children with shunts.
ELECTROENCEPHALOGRAM (EEG)
MAGNETIC RESONANCE ANGIOGRAPHY

(MRA)
EXTERNAL VENTRICULAR DRAIN (EVD)
SPINAL TAP
Brain cells talk to each other by creating small electrical

impulses. The EEG measures these impulses or the
electrical activity of the brain. EEGs are used to monitor
for seizure activity.
An external ventricular drain is a tube that is inserted

by a neurosurgeon to drain fluid from the ventricles
or lakes of the brain. An EVD is used to relieve
pressure in the brain when the normal flow of fluid is
blocked. The EVD attaches to a monitor, which gives
a continuous reading of the pressure in the brain. If
your child has an EVD in place, they will be monitored
in a specialized nursing area in the Intermediate Care
Environment (ICE) room or Pediatric Intensive Care
Unit (PICU).
MAGNETIC RESONANCE IMAGE (MRI)
This is a scan that uses a magnetic field to look very closely

at the area it is scanning. In neurosurgery, MRIs are used to
examine brain tissue and fluid in the brain.
Many young children may require sedation for
this test because it is very important to remain still
during the scan. Movement can create an artifact a
smudge or a blur on the pictures making it difficult or
impossible for the doctor to see the details of the brain.
A full MRI can take between 30 and 60 minutes.
In certain instances, some children will require a dye
or contrast given intravenously (in their IV). This
dye can help to highlight areas of concern such as
brain tumours.
New sequences have been developed that may allow a
doctor to get quick information without the full detail
This procedure uses both magnetic resonance

technology (MRI) and intravenous (IV) contrast dye
to visualize blood vessels. Contrast dye causes blood
vessels to be visible to the doctor.
This is also known as a lumbar puncture. It is a medical

test to assess the cerebrospinal fluid that bathes the
brain and spinal cord. A doctor carefully inserts a
needle between the bones of the lower spine to collect a
sample of this fluid.
CSF samples can help provide information on:
signs of possible infection (such as meningitis)
bleeding in the brain
conditions affecting the nervous system
TRANSCUTANEOUS DOPPLER
A transcutaneous doppler is a test used to measure the

flow of blood through the brains blood vessels. It can
be used to help diagnose multiple conditions in the
brain that would cause a change in the flow of blood.
For example, imagine a blood clot in a blood vessel.
The blood clot would cause the flow of blood to be
decreased or completely stopped. This test would be
valuable in identifying these specifics.
In neurosurgery, MRI scans
examine brain tissue and fluid in
the brain. CT scans look at blood,
bone and catheters.
Reference:
wikipedia.org/wiki/Brain, reviewed May 25, 2014;
brainmadesimple.com, reviewed May 25, 2014.
Thelan, L.A., Urden, L.D., Lough, M.E., Stacey,
K.M. (1998). Critical Care Nursing: Diagnosis and
Management. Mosby Inc., Missouri
The Compass
23

This section helps you understand who the skilled professionals are that you will meet during
your childs hospitalization and rehabilitation. In the medical world, acronyms are thrown
around left, right and centre this section will let you in on the conversation.
DOCTORS
Anaesthesiologists play a very important role in

your childs operation. They are the doctors at the
head of the bed. They administer medications to
put your child to sleep, insert breathing tubes, insert
lines, help with pain management and assess the
overall condition of your child during the operation.
You will meet them before your childs operation in
preadmission clinic and you will see them the day of
the operation.
A fellow is a medical doctor who has completed
their specialty residency, such as neurosurgery,
and is completing a sub-specialty. For example, a
neurosurgical fellow is a neurosurgeon and may be
completing one or two extra years of training to
specialize in pediatrics.
A neurosurgeon is a doctor who specializes in
operating on the brain or spinal cord. Their
specialty concerns the prevention, diagnosis and
treatment of conditions that affect the nervous
system (brain, spinal cord and peripheral nerves).
A neurologist specializes in the nervous system and
is trained to diagnose and treat medical conditions
that impact the brain, spinal cord and peripheral
nerves. While a neurosurgeon and neurologist
may work together to care for your child, a
neurologist and a neurosurgeon are not the same
NURSES
A charge nurse (CN) is the nurse who is responsible

for how a unit functions during a specific shift.
Charge nurses are usually more experienced senior
nurses. Charge nurses are registered nurses.
A licensed practical nurse (LPN) provides nursing
care after completing a two-year diploma. The scope
of practice for LPNs has broadened over recent years
to include many new skills such as administration of
IV and pain medicines.
A nurse practitioner (NP) is an advanced practice
registered nurse who has a masters degree in nursing
and clinical experience beyond that required of
the registered nurse (RN) role. NPs can diagnose,
prescribe and treat various conditions related to their
practice. NPs often run follow-up clinics where they
will see your child after your childs surgery. The
primary role of the NP is to help you navigate the
complicated medical care your child may require.
24
thing. Neurologists do not operate on your child; a

neurosurgeon does.
A neuro-ophthalmologist has the sub-specialty
of both neurology and ophthalmology concerning
visual problems that are related to the nervous
system, such as vision problems caused by a stroke.
A physiatrist is a specialist in movement disorders
such as cerebral palsy. If your child requires
a physiatrist, they will be seen in the Physical
Medicine Clinic at the Glenrose Rehabilitation
Hospital.
Radiologists use a variety of scans (MRI, CT scan),
x-rays and technology to aid in the diagnosis or treat
diseases in the body. Radiologists are the specialty
doctors who will interpret the results of these scans.
A resident has received a degree in medicine but is
completing hospital training under the supervision
of a fully trained doctor. You may hear them refer
to residents as a R1, R2 and so on; this number
refers to the number of years they have been a
resident. The higher the number, the more years
they have completed. Different medical specialties
have different lengths of training. For example
neurosurgical residents have six years of training.
A nursing attendant (NAT) is a person who

provides support services for RNs and LPNs.
A registered nurse (RN) is a nurse who graduated
from a nursing program at a college or university
and passed a national exam. Nurses practise in
hospitals or communities to help achieve good
health and prevent disease. Nurses in specialized
areas, such as operating rooms or intensive care,
require additional training to practice there.
A unit manager is often in the daytime charge nurse
role but their duties extend beyond that. The UMs
are responsible for the overall running of the unit
including scheduling staff and dealing with conflict.
If an issue arises during your childs admission, the
UM will help address your concerns.
The Compass
Whos Who on the Medical Team
OTHER HEALTH PROFESSIONALS
Audiologists are practitioners who treat patients

with hearing loss.
Occupational therapists (OT) help people of all
ages to improve their ability to perform tasks in
their daily living and working environments. They
also help in development, recovery, or to maintain
daily living and employment skills. Examples of
this include helping people learn how to feed
themselves, grooming skills and help with the
development of fine motor skills.
Physical therapists (PT) help with exercises and
other physical treatments. PTs will aid in the
development of gross motor skills. PTs and OTs
often work together. PTs will help your child get up
after surgery and ensure they are safe to go home
from a mobility perspective.
Respiratory therapists (RT) are breathing specialists.
RTs are also advanced practitioners in airway
management, establishing and maintaining the airway
and monitoring breathing equipment like ventilators.
If your child requires a breathing tube after an
SPECIALIZED CLINICS
There are many clinics in the Stollery Childrens

Hospital that have focused specialties your child might
need. We have included a few that are the most visited
by neurosurgical children. In most specialized clinics a
referral may be required by a physician or community
health nurse. The main hospital switchboard is
(780) 407-8822.
Pediatric Emergency Seizure Clinic: This clinic sees
children who came to the Emergency Department
because of new seizures onset, febrile seizures or
first time seizures.
Pediatric Head Shape Clinic: A full assessment of
the childs head shape is done and a treatment plan
is created. If required, the child may be referred
to other services. Room 1-170, Clinical Sciences
Building, Pediatric Surgery Clinic.
Pediatric Neuro-Oncology Monitoring Clinic: This
clinic provides specialized cancer care as a child and
their family travels through neurosurgery, radiation
therapy, chemotherapy and follow-up.
Pediatric Orthopedics Clinics: This clinic is
for children who require surgical or medical
management for conditions that impact the
musculoskeletal system, like bones, joints,
muscles and tendons. There are a variety of
reasons your child may be referred to this clinic,
including fractures, foot and hand deformities,
musculoskeletal issues and unstable hips.
Pediatric Neurology Clinics: Pediatric neurology
incorporates many different clinics that focus on
disorders of the central and peripheral nervous system.
The Compass
operation, they will be in the intensive care unit and an

RT will be involved to help manage their care.
A social worker is available to provide you with
assistance for a wide variety of issues. Some of the
services they provide include counselling (emotional
and financial), intervention to meet short-term
needs, education, linking with community resources
and discharge planning.
The unit clerk is at the front desk and does a wide
range of specialized secretarial tasks.
S
tudents: The Stollery Childrens Hospital is a
teaching institution, and there are students of all
professions learning from the treatment of your
child, to benefit treatment of other children.
Feel free to ask people who they are and explain what
their job description is if you dont understand.
GOOD TO KNOW: Many people on the medical team
wear scrubs.
Clinics that fall under pediatric neurology are:

- General Pediatric Neurology Clinic
- Comprehensive Epilepsy Clinic
- Comprehensive Epilepsy Surgery Follow-up Clinic
- Headache Clinic
- Neuromuscular Clinic
- Pediatric Stroke Clinic
- Movement Disorder Clinic
- Neuro-Genetic Clinic
- Neurometabolic and Demyelinating Clinic
- Neurodevelopmental / Neuromotor Clinic
S
hunt and Hydrocephalus Clinic: This clinic specializes
in assessment, management, education and intervention
for children with hydrocephalus and shunts.
Pediatric Neurosurgery Clinic: Located in the
Clinical Sciences building, room 1-170, this is
where you will see your neurosurgeon or nurse
practitioner for diagnosis and follow-up. If your
child has a brain tumour, they may also be followed
in the neuro-oncology clinic. The clinic does not
book the appointments. The physicians office is the
point of contact to reschedule your appointment.
Contact:
Dr. Vivek Mehta (780)407-8346
Dr. Jeffrey Pugh (780)407-1537
Dr. Keith Aronyk (780)407-6870
Reference:
albertahealthservices.ca/services.
asp?pid=service&rid=1012102
25

This next section will offer information on some of the
more common conditions and diseases that are seen
in pediatric neurosurgery. We have tried to include a
description of each condition, identify causes, signs and
symptoms, diagnostics and treatment options.
If the condition your child has been diagnosed
with is not in this section, a few reputable sites to
investigate it are:
neurosurgerykids.com
wikipedia.org (available in multiple languages).
ACHONDROPLASIA
Achondroplasia is the most common form

of dwarfism.
What causes achondroplasia?
Achondroplasia is due to a gene mutation in the
FGFR3 gene, which causes abnormal cartilage
formation. Approximately one in 25,000 babies is born
with this condition. In most cases, the parents are of
average height and this is a new gene mutation.
What are the symptoms of achondroplasia?
The following are the most common symptoms
of achondroplasia. However, each child may
experience symptoms differently. Symptoms
may include:
Large head with a prominent forehead, short arms
legs, fingers and toes with average size torso
Abnormally small opening at the base of the skull
which can lead to breathing problems
Misaligned teeth
Curved lower spine (lordosis, kyphosis)
Bowed legs below the knee
Broad, flat feet
Weak muscle tone and relaxed joints
Normal intelligence
How is achondroplasia diagnosed?
Achondroplasia can be diagnosed during routine
perinatal ultrasound, or shortly after birth on physical
examination. Genetics testing confirms diagnosis.
Expect x-rays (skeletal survey) and an MRI.
26
26 Achondroplasia
27 Arachnoid cyst
27 Arteriovenous malformations
28 Brain abscess
29 Cerebral aneurysms
30 Brain and spinal tumours
31 Cerebral palsy
33 Chiari malformations
34 Craniosynostosis
37 Epilepsy
39 Hydrocephalus
40 CSF shunts
43 Intracranial hemorrhage
44 Moyamoya disease
45 Spina bifida
46 Syringohydromyelia (Syrinx)
47 Occult spinal dysraphisms (OSD)/tethered cord
Treatment of achondroplasia
Most children with achondroplasia will not need
neurosurgical intervention. Neurosurgical intervention
in children with achondroplasia focuses on the
following areas:
Brainstem compression: The opening at the base
of the skull where the brain and spine exit, called
the foramen magnum, can become compressed.
This compression can pinch the brainstem causing
breathing difficulties, which can lead to death if not
treated.
Hydrocephalus: The flow of cerebral spinal fluid
may be a complication in some children, and if
required, a shunt may be inserted into the brain to
relieve the pressure and drain CSF.
Spinal cord/spinal nerve compression: If the
vertebrae do not grow to allow for enough space for
nerves to pass in and out, spinal nerves can become
compressed, which can lead to numbness, pain or
weakness.
Orthopedic surgery: Many children with
achondroplasia have lordosis or kyphosis, which is
abnormal curvature of spine (hunch back or round
back). It may require orthopedic surgery.
Reference:
hopkinsmedicine.org; Achondroplasia,
en.wikipedia.org, reviewed June 2, 2014.
The Compass
Common Pediatric Neurosurgical Diagnoses
ARACHNOID CYSTS
Arachnoid cysts are sacs that are filled with

cerebral spinal fluid that form in the brain or spine;
they are not tumours. Arachnoid cysts may grow
and some will shrink but most will stay the same
size. The majority of arachnoid cysts are found
coincidentally on a scan done for another reason
and will not become symptomatic or require
surgical intervention.
What are the symptoms of arachnoid cysts?
The symptoms caused by arachnoid cysts depend on
the location and size of the cyst. Some of the symptoms
can be headaches, nausea/vomiting, lethargy, seizures
and vision issues.
ARTERIOVENOUS MALFORMATIONS
Arteriovenous malformations (AVMs) are abnormal

connections between the veins and arteries. This
tangling of blood vessels can occur anywhere but it is
most common in the brain and spine. AVMs vary in size
and location in the brain.
Most individuals with an AVM do not have any
symptoms until the vessels rupture and bleed into the
brain. AVMs are often detected when people have a CT
or MRI scan for another issue.
Symptoms of AVMs may be seizures, headaches, ear
noise/buzzing, progressive weakness or numbness.
More serious symptoms may require immediate
medical attention, such as severe headaches, vision
issues, balance issues, speech problems or weakness/
numbness based on the location of the AVM.
Complications of AVM
Brain hemorrhage or bleeding in the brain
Reduced oxygen to the brain caused by the altered
AVM
Treatment of arachnoid cysts

A neurosurgical team will work with you and assess the
best treatment option for your child. Treatment most
often is not required. If treatment is required, it may
include the following:
A cystoperitoneal shunt is a procedure that drains
the cyst and relieves the pressure in the brain.
A cyst fenestration is a procedure where the walls
of the cyst are opened up into the normal parts of
the brain.
Surgery may not be necessary if the neurosurgical team
suspects that the symptoms are not actually caused by
the cyst. Yearly MRIs monitor for drainage in the cysts.
flow of blood in this tangled area of vessels

Weakness in the blood vessel wall may lead to the
formation of aneurysms in the veins that supply
blood to the AVM
Diagnosing AVM
Any patient suspected of having an AVM will undergo a
thorough history and physical exam by the medical team.
A CT scan or MRI of the brain will often be done to
confirm the presence of an AVM.
Cerebral angiograms can show the location and
features of the AVM. The team threads a catheter into
a patients artery up to the site through the groin and
injects a specialized dye to map out the vessels.
Treatment
A neurosurgeon will decide how to treat the AVM
depending on the location and size of the abnormal
blood vessels.
AVM
1.8 Arteriovenous malformations seen on a cerebral angiogram and MRI
The Compass
27
If surgery isnt needed, the doctor may order

medications to help manage symptoms.
Surgical removal of the AVM might be in order
if its small and not deep within brain tissue. The
neurosurgeon would remove a part of the skull to
gain access to the brain, then use special clips to
seal off the AVM and remove it. The surgeon would
reattach the skull and close the scalp incision.
Endovascular embolization is a procedure in
which the doctor uses advanced x-ray machinery to
thread a catheter through the leg artery up to the
brain. The doctor places the catheter in one of the
arteries that feeds the AVM and he injects a gluelike substance to reduce the blood flow to the AVM.
Endovascular embolization occasionally is used as
BRAIN ABSCESS
A brain abscess is a pocket of infection within the brain.

The body will often wall off the abscess with a thick
membrane (collagen capsule) with the central area
containing pus. There may be only a single abscess or
multiple abscesses in the brain.
Brain abscesses are not very common in children.
Typical age at diagnosis is five to 12 years of age.
What causes brain abscess?
Bacteria are common sources of infection that can
cause a brain abscess. Brain abscesses generally occur
three ways: spread from a contiguous area of infection
(such as sinusitis or mastoiditis), spread from a blood
infection, or after an opening in the skull (either from
trauma or surgery).
BRAIN ABSCESS
a stand-alone treatment but most often is coupled

with surgery or stereotactic radiosurgery.
Stereotactic radiosurgery is a procedure that uses
focused radiation to scar the area and shrink the AVM.
Generally AVMs smaller than three centimetres are
suitable for this technology and it takes a minimum of
two to three years to know if the treatment has worked.
Reference:
mayoclinic.org/diseases-conditions/brain-avm/
basics/definition/con-20034230 Reviewed April
2, 2014; Arteriovenous malformation cerebral
ncbi.nlm.nih.gov/pubmedhealth/PMH0001783/,
reviewed April 2, 2014.
What are the symptoms of brain abscess?

Symptoms are dependent on the location and size
of the abscess. The following are the most common
symptoms of brain abscess.
Babies: fever, irritability, sleepiness, poor feeding,
projectile vomiting, high-pitched crying, bulging
and firm soft spot on top of the babys head.
Children: fever, poor coordination, lack of appetite,
increased sleeping, nausea/vomiting, decreased level
of consciousness.
The symptoms of a brain abscess may resemble
other conditions or medical problems. Therefore, it is
important for a thorough assessment by a health care
professional and diagnostic imaging.
How is a brain abscess diagnosed?
Diagnostic tests that may be performed to confirm the
diagnosis of brain abscess include:
Blood work
Lumbar puncture or spinal tap to test the cerebral
spinal fluid
Magnetic resonance imaging (MRI). Intravenous
(IV) contrast agents may be given during the scan to
better highlight the abscess
Computed tomography scan (CT or CAT Scan)
Treatment of brain abscess
Specific treatment for a brain abscess will be
determined by your childs neurosurgeon based upon
the location, size, and number of abscesses present.
For neurosurgical treatment, drainage of the abscess
is often accomplished with needle aspiration or via
a craniotomy (skull removal). After drainage of the
abscess, the team will try to identify the bacteria
responsible for the infection and tailor the antibiotics to
fight the infection.
1.9 MRI of brain abscess
28
The Compass
CEREBRAL ANEURYSMS
What are aneurysms?

Cerebral (brain) aneurysms occur when there is a
weakness in the wall of the artery or vein and there is
a ballooning out of that section. These ballooned out
areas can burst and bleed into and around the brain.
What happens if it ruptures?
If an aneurysm leaks into the space around the brain it
is called a subarachnoid hemorrhage.
Symptoms can depend on the amount of blood. Some
symptoms that may occur are a sudden severe headache
that can last for several hours to days, nausea and
vomiting, drowsiness and/or coma.
If the bleeding damages the brain, usually
from bleeding directly into the brain, it is called a
hemorrhagic stroke. This can cause sudden severe
headache, nausea, vomiting and paralysis or weakness
of arm or leg, speech disturbances, vision problems or

seizures.
The damage to the brain tissue and function results
from the blood, the increased pressure and swelling
that occurs.
If you suspect subarachnoid hemorrhage or
hemmorhagic stroke, immediate urgent care is required.
How are cerebral aneurysms diagnosed?
A thorough head-to-toe assessment by the medical
team is important in diagnosis. The physician will
likely have an emergent MRI or CT scan completed.
These scans will give the doctor a better idea of what
is going on in your childs brain. If the CT or MRI scan
suggests an aneurysm, then a computed tomography
angiogram (CTA) or conventional catheter angiogram
may be needed. As pictured, a catheter angiogram offers
a roadmap of the vessels of the brain.
Treatment of cerebral aneurysms
The majority of pediatric aneurysms will require some
form of intervention.
One method is for a neurosurgeon to place very
delicate clips at the base of the aneurysm. Care is taken
not to injure or compromise the blood vessels in the
area to prevent a stroke from occurring.
Another option is endovascular coiling of an aneurysm.
With this procedure, radiologists or neurosurgeons put a
catheter in the artery feeding it to the abnormal vessel in
the brain. From here, various materials such as coils have
been used to plug the aneurysm.
ANEURYSM
Reference:
What you should know about strokes from
strokeassociation.org, reviewed on May 23,2014.
1.10 Angiogram showing an aneurysm of the internal carotid artery
BLOOD VESSELS
BRAIN
Steve Adams
CEREBRAL ANEURYSM
1.11 Aneurysms
The Compass
29
BRAIN AND SPINAL TUMOURS
Brain tumours are one of the most common types of

childhood cancers. A diagnosis of a brain tumour can
send shock and fear through both the patient and the
family members. Brain tumours in children are not all
alike, and as their makeup varies, so does the treatment
and outcome. With all of the variations in ways to
diagnose and treat brain tumours, we have elected to
offer a small insight in this section.
If your child is diagnosed with a brain tumour, it is
important you understand the name and type of tumour.
At the Stollery Childrens Hospital you will be given a
book called Childhood Brain & Spinal Cord Tumours:
A Guide for Families, Friends and Caregivers, which the
Kids with Cancer Society generously donated. This book
is a wealth of knowledge and will have more information
specific to your childs diagnosis. If you havent received
the book yet, make sure you ask someone on your childs
medical team for a copy.
Brain tumours in children can be divided into two
categories: malignant and benign. Malignant generally
means that the tumour will become progressively worse
and is capable of invading the adjacent brain tissue.
Malignant tumours are often considered cancerous
tumours. Benign tumours are generally slow growing
and do not often spread to other areas of the brain. The
problem with benign tumours in the brain is that while
they are slow-growing or not aggressive, they also dont
respond as well to other therapies or treatments such as
chemotherapy or radiation therapy. This is important
when the tumour grows in an area of the brain like the
brain stem which is a very difficult area to operate in.
Gliomas
While there are other types of brain tumours in
children, the most common types are gliomas and
medulloblastomas. Gliomas originate from the glial
cells in the brain. The glial cells are the supportive
cells in the brain and have responsibilities such as
myelination (insulating covering of axons from a cell
called a neuron). Common types of glial tumours are:
Astrocytomas
Ependymomas
Oligodendrogliomas
Glial tumours can be either low grade (benign) or higher
grade (malignant). Treatment of low-grade glial tumours
may involve a single therapy such as surgery. Occasionally
even benign glial tumours will be treated with radiation
or chemotherapy. Malignant glial tumours will often have
all types of treatment and often cannot be cured.
Medulloblastoma
A medulloblastoma is malignant tumour that
occurs in the cerebellum or the back of the brain.
Medulloblastomas can be fast-growing tumours and,
30
1.12 MRI of brain tumour
unlike many other types of brain tumours in children,

can be passed on through the CSF and result in the
tumour spreading down the spine (metastasizing). As
a result, medulloblastomas require surgery followed
closely by chemotherapy, radiation therapy or both. You
may also hear a medulloblastomas be referred to as a
PNET, or a primitive neuroectodermal tumour. Both
terms refer to the same type of tumour.
Like brain tumours, spinal cord tumours can vary
in type, be benign or malignant and can be found in
different areas of the spinal cord. Common types of
spinal cord tumours in children are ependymomas and
astrocytomas.
What causes brain or spinal tumours?
Often the first question parents ask is, what caused
this tumour? Was it something I did or didnt do? The
answer to the second question is a resounding no.
Your childs brain tumour is an unfortunate and awful
occurrence, in no way your fault. The answer to the
first question is not so simple. Truthfully, it is largely
unknown. A tumour forms when normal healthy
cells start to multiply and grow abnormally at a faster
rate. What causes these cells to turn on and begin this
process is not well understood.
Research aims to explore both genetic and possible
environmental reasons for this accelerated process.
There are some well-known genetic conditions, such as
neurofibromatosis or von Hippel-Lindau. Individuals
with these conditions have a higher rate of developing
a brain tumour than the average person, but for most
patients, the cause will never be exactly known.
The Compass
How is a brain tumour diagnosed?

Most brain and spinal tumours are diagnosed with
a CT scan or an MRI. Often doctors order a CT scan
when the child presents to the emergency room. A CT
scan is an easier type of brain scan to arrange and most
often doesnt need sedation. When a brain tumour is
suspected or found, an MRI will most likely follow.
This MRI will require the child to lie perfectly still, so
depending on the age and maturity of the child, sedation
may be required. For most tumours a dye will be injected
into your childs intravenous (IV) part way through the
MRI to enhance or highlight certain features of the
tumour and guide us in deciding what type of tumour
it is and the next steps in treatment. Most children will
also require some blood work at the same time to check
how healthy they are and to prepare them for treatment
such as surgery. When we suspect certain types of
tumours, we may order very specific blood work such
as alpha-fetoprotein (AFP) or beta human chorionic
gonadotropin (beta-H_ C_ G_). These markers or
indicators can help us identify what type of tumour you
child has.
How are brain tumours treated?
The treatment for brain and spinal tumours varies
greatly depending on the type and location of tumour.
CEREBRAL PALSY
What causes cerebral palsy (CP)?

CP results from abnormal development or damage to
part of the brain that controls motor function. It causes
abnormalities in posture, muscle tone and movement.
CP impacts children differently, ranging from mild
to severe.
Although most cases of CP are of unknown cause,
certain risk factors have been identified. They include
prematurity, bleeding in the brain, trauma, infection,
complication during labour and delivery, and drug/
alcohol abuse during pregnancy.
What are the symptoms of cerebral palsy?
Although each child may experience symptoms
differently, there are some common representations.
As babies grow older they will often begin to show
delays in meeting developmental milestones or have
poor motor control.
Over time, and as children grow, the muscles may
become stiff, especially in the arms and legs. This is
called spasticity. Please read the section on spasticity for
more information.
Children with CP may also have additional health
conditions such as seizures, strabismus (when eyes
point in different directions), respiratory issues,
bladder/bowel problems, bone abnormalities, hearing
or speech issues and learning disabilities.
The Compass
In some cases, blood work will tell us what type

of tumour your child has and no brain surgery is
necessary. Your child will be transferred to the oncology
(cancer) program and chemotherapy or radiation will be
the main treatment. In other cases doctors may opt to
get a biopsy (a tiny sample) of the tumour.
A biopsy is when doctors make a small hole in your
childs scalp and skull and go in with an instrument
to take a small piece of the tumour to examine and
make a diagnosis. Depending on the results of the
biopsy and what type of tumour your child has, they
may require a more extensive surgery or may not
require any additional surgery, but they will require
some other therapy such as chemotherapy or radiation
therapy. And in other cases you child may require
a much larger surgery in order for the pediatric
neurosurgeon to be able to try to remove as much of
the tumour as possible. The team will discuss the exact
plan for you and your child.
Reference:
Shiminski-Maher, T., Cullen, P., & Sansalone, M.
(2002) Childhood Brain & Spinal Cord Tumours;
A Guide for Families, Friends and Caregivers.
ORiely & Associates, California.
How is cerebral palsy diagnosed?

The medical team makes a diagnosis of CP with a
complete and thorough physical. Although symptoms
may appear early, diagnosis is typically made at one to
two years old. Doctors may use diagnostic tests such as
an MRI of the brain, an x-ray of the spine or body,
EEG, blood tests and gait analysis to help with
diagnosis. Gait analysis is a specialized test of how
the child walks.
Important terms for CP diagnosis
Diplegia: either both arms or both legs affected
Hemiplegia: limbs on only one side of the body
affected
Quadriplegia: all four limbs are impacted
Monoplegia: one limb is affected
Triplegia: three limbs impacted
Types of cerebral palsy
Spastic cerebral palsy is the most common type
of cerebral palsy. It causes the muscles to be stiff
and tight.
Athetoid (or dyskinetic) cerebral palsy is
characterized by uncontrollable movements.
Athetosis is characterized by slow, uncontrollable
movements of the hands, feet, arms, or legs.
Chorea causes abrupt, irregular, jerky movements.
31
Choreoathetosis is a combination of the two above

conditions.
Dystonia causes slow rhythmic movements with
muscle tone and postures abnormalities.
Ataxic cerebral palsy affects balance and depth
perception. Persons with ataxic CP have poor
coordination and walk unsteadily.
Mixed cerebral palsy means the child has symptoms
of two or more types of cerebral palsy.
Treatment of cerebral palsy
There is no cure for CP and goals of treatment are to
minimize the complications and manage the symptoms.
A multidisciplinary health care team is involved to
care for children with CP.
The Physical Medicine Clinic at The Glenrose
Rehabilitation Hospital has specialized doctors called
physiatrists who monitor children with CP closely and
provide medical intervention, such as botox treatment.
Surgical and non-surgical interventions are managed
based on childs specific needs.
Neurosurgical operative interventions for spasticity in
cerebral palsy patients
After the medical treatment for spasticity in children
has been exhausted, neurosurgeons may be asked to
get involved in the management of your childs
increased tone.
Baclofen pump: When a higher dose of baclofen
is required and the results cannot be achieved
with oral medications, the team may consider
using intrathecal baclofen. This means the drug
is inserted into the spinal fluid around the spinal
cord so that the drug can work directly on the
spinal cord. A baclofen pump requires surgical
placement of a hockey-puck-shaped pump into
the belly. A line is threaded around the side
into the spine. The pump allows for continuous
delivery of baclofen. Doctors use an external
programmer to change dosage. A baclofen pump
requires refilling approximately two to four times
per year using a simple needle insertion into the
pump under sterile conditions. Baclofen pumps
32
are an option for children who require a high

dosage of oral baclofen and have side effects.
Administering via a baclofen pump allows for
a significantly lower dose, subsequently less
symptoms while still having the positive effects of
decreasing spasticity.
Selective dorsal rhizotomy: This is a procedure
done for children with spastic diplegia who have
failed maximum medical management for tone.
Usually the procedure happens at the age of
seven or eight and involves sectioning some of
the sensory nerve roots that are important for the
development of spasticity. It involves an operation
in the lower spine so that the nerves can be
accessed and selectively cut.
If your child has been diagnosed with CP, contact
CP Alberta and CP Edmonton for assistance and
guidance. Take a moment to review the resource
section in this book and find out what is available in
the community for support.
Reference:
kidshealth.org/parent/medical/brain/cerebral_
palsy.html; Disease and conditions, cerebral palsy
from mayoclinic.org, reviewed on May 6, 2014.
Community Health nurses will offer

you information on age-appropriate
milestones during your immunization
appointments.
Look at myhealth.alberta.ca for information
on developmental stages for ages zero to six years.
GOOD TO KNOW: Find out more about education,

therapies and research for children with neurological
conditions at threetobe.org.
The Compass
CHIARI MALFORMATIONS
A Chiari malformation is a neuroanatomical condition

that involves the area of the brain closest to the spinal
cord. This part of the brain (the cerebellar tonsils, which
are not the tonsils in the throat) descends into the neck
area. The cerebellar tonsils normally reside within the
cranial cavity. In children if the tonsils are more than
five millimetres into the spinal canal then a radiologist
may report that your child has a Chiari malformation.
It is important to remember that the doctors will also
look at the base of the skull to see if the base of the skull
looks tight and if the bones are developed correctly.
When the cerebellar tonsils descend too low into the
cervical spinal canal the physician will often make sure
that there are no abnormalities in the brain that are
pushing the tonsils down or any abnormalities in the
spinal canal pulling the tonsils down.
Different types of Chiari malformations
Different malformations are numbered from one to
four. The variations in terminology depend on if the
tonsils are the only part of the brain to move into the
cervical spinal canal. In some of the other subtypes
other parts of the cerebellum (vermis), fourth ventricle,
or brainstem migrate into a lower position. Excess
water can collect within the spinal cord, or the bones at
the craniocervical junction can be abnormal, resulting
in a complex Chiari malformation.
Type I: This is the most common type of
Chiari malformation. Most of the patients are
asymptomatic and the diagnosis is made based on
MRI imaging.
Type II: Type II involves the cerebellar tonsils,
the brainstem, and part of the 4th ventricle that
will descend into the spine. This type of Chiari is
associated with children with spina bifida from
birth and occasionally needs treatment.
CHIARI TYPE I
What are the symptoms of Chiari malformation?

Most Chiari malformations are asymptomatic.
To find out if the Chiari malformation is symptomatic
in your child, the physician will ask specific questions
and examine for certain abnormalities.
Chiari 1 symptoms
- Brainstem: children may have trouble with
breathing or swallowing
- Cerebellum: children may have problems with
balance and normal movement of the eyes
- Spinal cord: children may have trouble with
weakness, numbness or pain in the arms or legs
- Headaches: children may have trouble with
occipital headaches that are precipitated by
coughing, sneezing or physical activity
- Scoliosis: children with scoliosis can sometimes
have a Chiari malformation with an associated
excess cerebrospinal fluid within the spinal cord,
called syringomyelia
Surgical treatment
If your child needs surgery for his/her Chiari
malformation, surgical techniques vary. If there is
no problem with the top compartment of the brain
or the spinal system, then the neurosurgeon will
focus on the base of the skull and top of the spine.
The principle of the surgery is to decompress the
cranio-cervical junction to take any pressure off
the back of the brain and allow normal cerebrospinal
fluid dynamics to take place.
Reference:
Donald M Hadley J Neurol Neurosurg Psychiatry 2002;
Chiari Malformation Fact Sheet, NINDS. Publication
date March 2013. NIH Publication No. 13-4839.
CHIARI TYPE II
1.13 MRI of a Chiari type I and type II
The Compass
33
CRANIOSYNOSTOSIS
An infants skull is made up of lots of interlocking

bones that will join later, allowing for brain growth.
Craniosynostosis (CS) is a premature fusion of one or
more of these joining points, called cranial sutures. It
causes a deformation of the skull. The incidence of CS
is difficult to quantify since some milder forms are not
reported, but our best estimates are roughly one baby
in 2,100 is born with it. With CS, the head and brain
growth can be restricted depending on the number
and location of the suture fusion. CS requires surgery
to be corrected and often a remolding helmet is added
depending on the age of the child. Premature fusion of
one or more of these sutures causes abnormal growth
patterns perpendicular to the suture, resulting in
changes to the infant head shape and at times the face
of the infant.
What causes craniosynostosis?
Craniosynostosis may be caused by genetic factors.
Most cases of craniosynostosis are not related to a
genetic abnormality. Certain suture fusions are more
CORONAL SUTURE
FRONT
METOPIC SUTURE
SAGITTAL SUTURE
likely to have a genetic cause than others and thought

to have a genetic link as they tend to be found in
more than one family member. For some instances of
craniosynostosis a single-gene mutation is likely to be
the cause. These gene mutations cause early fusing of
the normal sutures of the skull.
Syndromic or multiple suture synostosis is often
caused by multiple gene mutations which may include
FGFR 1, FGFR 2, FGFR 3 and the TWIST genes.
Mutation of these genes can lead to the more severe
forms of craniosynostosis such as Crouzons, Apert and
Peiffer syndromes.
How is craniosynotosis diagnosed?
Most often, craniosynostosis is diagnosed by a
thorough physical exam. This helps to distinguish
a craniosynostosis from a positional head shape
abnormality such as positional plagiocephaly or
brachycephaly. There are tell-tale signs that help
clinicians determine the type of craniosynostosis:
Sagittal synostosis: This is a premature fusion of
IPSILATERAL
FRONTAL
FLATTENING
FRONT
FUSED
SUTURE
1.14 Normal sutures
THE PATIENT
HAS A LONG,
NARROW HEAD
BACK
LAMBDOID SUTURE
BACK
1.15 Unilateral coronal synostosis
FRONT
THE PATIENT
HAS A TRIANGLESHAPED
FOREHEAD
FRONT
FUSED
METOPIC
SUTURE
1.16 Saggital synostosis
34
BACK
Charles Burke
FUSED
SUTURE
BACK
1.17 Metopic synostosis
The Compass
the sagittal suture. Fusion of this suture does not

allow for the expansion of the skull width-wise and
so the babies develop long narrow heads. Sometimes
the infants will develop what is known as frontal
bossing or a forehead that seems to stick out more
than that of the average baby. In these babies the
back part of the head will tend to be narrower than
the forehead, which is not the case in a normal
infant skull where the back part of the head is the
widest part of the skull.
C
oronal synostosis (unilateral or bilateral):
Coronal synostosis can be the fusion of one of
the coronal sutures (unilateral) or fusion of both
sutures (bilateral). Unilateral coronal synostosis
will cause one eye to look significantly wider than
the other and will cause the nose to tip to one side.
Bilateral coronal synostosis (both sides) will give
the appearance of a very tall forehead and two wide
eyes and is more likely to be associated with an
underlying genetic abnormality.
M
etopic synostosis: Metopic synostosis is a
premature fusion of the suture line that runs down
the middle of the forehead. It gives the appearance
of a triangular forehead and the eyes are close
together. Because the metopic suture normally fuses
at a young age, this type of synostosis is generally
not progressive and the look of the forehead and
face will usually not get worse over time.
Lambdoid synostosis: Lambdoid synostosis is
very rare and is often confused with a positional
plagiocephaly. Lambdoid synostosis causes a flat
back of the head on the same side as the fused
suture. The ear on the fused side tends to be located
more downwards and backwards than the other ear.
Plain x-rays are generally not helpful in the diagnosis
of craniosynostosis. If the health care professional is
unsure of the diagnosis, a 3-D CT scan of the skull may
help. A 3-D CT is done in a regular CT scanner but takes
1.18 Regular CT showing bone
The Compass
many more pictures of the skull. The baby or child is

required to lay still, so depending on the age of the
child, sedation may or may not be necessary. Computer
software is then used to create a 3-D model of the
skull, which is useful for both diagnosis and surgical
planning. In some cases, mostly with multiple suture
synostosis, the neurosurgeon may order an MRI of the
brain to check the overall health of the brain and to
make sure there is not underlying hydrocephalus before
any operations are performed.
How is craniosynostosis treated?
There are several ways to approach the correction
of craniosynostosis. Options for surgery depend on
the age and diagnosis of your child. Different centres
may offer different treatment options. At the Stollery
Childrens Hospital we generally have three different
types of surgical repairs:
Endoscopic surgical repair: This surgery is most
commonly available to babies under three to four
months of age that have a sagittal synostosis.
While there may be options to perform endoscopic
surgery on a different fused suture, such as a
lambdoid or a unilateral coronal, the infant age is
not optional. In order to be able to perform this
surgery endoscopically the bone of the infants
skull must be thin enough to use scissors to cut it.
After four months of age the childs skull changes,
making the technique less effective. If your baby is
a candidate for an endoscopic repair, they will have
two three-centimetre incisions on the scalp, one
just behind the soft spot or fontanel and a second
incision near the back of their skull.
Using an endoscope, the scalp is carefully lifted
off the skull so as to not tear any major veins.
Surgical scissors are then used to cut out at the
fused suture, which is approximately the width
of your thumb and about eight to 10 centimetres
long. Cuts may also be made under the skin down
the sides of the skull to allow for more rapid
growth width wise. The surgery takes about two
to three hours to complete. Babies often spend
their first night after the operation in the ICE room
(intermediate care environment) or step-down
PICU (pediatric intrusive care unit) and are in
hospital for two days. At this age the bone that is
removed will grow back in, much like the soft spot
of a baby closes as the baby gets older.
Once the skin incisions have healed,
approximately two weeks after the surgery, the
baby will be fitted for a remolding helmet. This
helmet will continue to round out the skull, and
works by gradual pressure, much like a retainer
does on a childs mouth. The helmet is worn 23
hours a day, seven days a week, for four to six
months. The helmet must be modified here at the
35
Stollery Childrens Hospital every week for the

first months, and then approximately every two
weeks after that. Occasionally a second helmet may
need to be made if the head growth or skull shape
change is rapid and the baby outgrows the current
helmet. There are no out-of-pocket costs associated
with the surgery or helmets for babies who have
craniosynostosis.
Minimal open surgical repair: This surgery is
similar to the endoscopic surgical repair, but will
often have wider incisions as either the forehead,
the back of the head or both are more severe and
require more surgical repair. This still requires the
infant to be under about eight months of age and
to have only one fused suture. The surgery takes
about two to three hours to complete, babies often
spend their first night after the operation in the
ICE room or step-down PICU and are in hospital
for two to four days. Most babies will require a
remolding helmet after the surgery.
Total cranial vault repair: This surgery is
often performed on infants who are diagnosed
older or have multiple suture fusions. A total
cranial vault involves an ear-to-ear incision and

will most likely require some dissolvable plates and
screws to be used to secure the bone cuts in place.
The surgery varies from case to case. Occasionally
the neurosurgeons will ask a pediatric plastic
surgeon to help with shaping the skull. This
surgery takes six to eight hours, and infants may
spend a night in the Pediatric Intensive Care
before being transferred to the ICE room or stepdown PICU. Generally, babies are in hospital for
about a week and usually they do not require a
remolding helmet.
Reference:
Hummel, P., & Fortado, D. (2005a).
Impacting Infant Head Shapes. Advances in
Neonatal Care, 5(6), 329-340.
Lajeunie, E., Le Merrer, M., Bonaiti-Pellie,
C., Marchac, D., & Renier, D. (1995).
Genetic study of nonsyndromic coronal
craniosynostosis. American Journal of Medical
Genetics, 55(4), 500-504.
FUSED
SUTURE
FRONT
BACK
1.21 Endoscopic sagittal synostosis repair incisions
36
1.20 3D CT scan showing fused sagittal suture
OUTLINE
OF BONE
REMOVAL
FRONT
Charles Burke
1.19 3D CT scan showing fused LT coronal suture
BACK
1.22 Endoscopic sagittal synostosis repair removal
The Compass
EPILEPSY
Epilepsy is a condition that affects people of all ages,

although younger children are more likely to have
seizures than adults. Epilepsy occurs when there is
abnormal electrical activity in the brain. Young children
can have seizures if they have a high fever. This is called
a febrile seizure and doesnt mean a child has epilepsy.
What causes epilepsy?
In many cases there is no specific cause of epilepsy. A
few known causes of epilepsyinclude genetics, minor
brain injury or brain infection such as meningitis
or encephalitis that produce scarring on the brain,
abnormal development of the brain that may or may
not be seen on MRIs, or brain tumours.
What are the symptoms of epilepsy?
Seizures can cause a wide variety of symptoms such as:
Strange sensation on one side of the body
Changes in behaviour or emotions
Muscle spasms
Convulsions
Sudden loss of awareness or consciousness
There may be certain factors that contribute to seizures.
Poor nutrition, missed medication, flickering lights,
skipping meals, iIlness, fever, allergies, andlack of sleep
are a few common triggers. Many people learn what
their triggers are and strive to avoid them to prevent a
seizure from occurring.
How is epilepsy diagnosed?
There are a variety of tests used to diagnose epilepsy.
Electrical recordings of the activity of the brain
called electroencephalograms (EEG), video-EEG
telemetry, computed tomography (CT), magnetic
resonance imaging (MRI), and positron emission
tomography (PET) can help doctors assess and visualize
abnormalities.
The above tests are described in tests/procedure
section.
A video-EEG is a test where a video camera is
running simultaneously during an EEG, offering
neurologists the ability to assess all aspects of the
seizure.
Here are some terms that you may hear from your doctor
with the diagnosis:
Idiopathic means there is no apparent cause.
Cryptogenic means there is a likely cause, but it has
not been identified.
Symptomatic means that a cause is known.
Generalized means that the seizures are involving
the whole brain at once.
Focal or partial means that the seizure starts from
one area of the brain.
The Compass
Types of epilepsy
The two types of epilepsy are generalized and partial
(focal). The seizures associated with generalized
epilepsy (whole brain involved) are:
Grand mal seizures: Patients lose consciousness
and have muscle stiffness and convulsions. You will
often hear this referred to as tonic-clonic. Tonic
is referring to the stiffness and clonic is referring to
the jerking motion.
Petit mal or absent seizure: This type of seizure
can occur multiple times in a day. There is a
change in consciousness and patients may stare
in a strange way.
Clonic seizures: Patients experience jerking
movement with no change in consciousness
Tonic seizures: Muscles are stiff
Atonic seizures: Muscles become weak
The types of seizure for partial (focal) epilepsy are:
Simple: When people have simple partial seizures,
they are fully awake, alert and able to interact
during the seizure. These seizures are short in
duration.
Complex: During these seizures people can appear
like they are day-dreaming and staring blankly.
Some people will begin fidgetting or doing a
repetitive movement such as picking at clothes or
smacking their lips.
Managing seizures:
Some children have seizures that are controlled with
medications while other children have seizures that
are difficult to control, despite treatment. The type of
epilepsy that is difficult to controlis called medically
intractable epilepsy. Uncontrolled epilepsy places the
child at risk for physical injury during seizure/falls,
adverse reaction to medications, learning impairments
and disruption to daily life.
The first treatment option for epilepsy is always
medication. There are many different types of
medications that may be used depending on the type of
epilepsy and frequency of seizures. If one medication is
not successful in controlling the number and severity of
seizures others may be added.
If a child is on multiple medications and continues
to have debilitating seizures, a workup for brain
surgery may be an option for your child. This workup
will usually include continuous telemetry to try to
determine the area of the brain that is causing the
seizures. Patients may also require depth electrodes,
a surgical procedure where, while your child is asleep,
very thin electrodes are inserted into the brain to
further identify the area where the seizures are starting.
The electrodes are connected to a monitor for several
days and continuous reading of the electrical impulses
37
of the brain are recorded and analysed by your medical

team to map the area of the brain that may need to be
resected or removed. If an area of the brain is identified
to be the primary spot of origin of the seizures then
surgery may be an option.
It is important to remember that most children with
epilepsy will have good control of their seizures with
medications. There are even certain types of seizures that
children may outgrow with time. Symptomatic seizures
due to an area of scarring in the brain, abnormal brain
development, or tumour are often more difficult to treat
with medications alone. These are the ones where more
investigations are necessary to determine if surgery can
help stop or control the seizures. When a specific area
of the brain is identified to cause seizures and we can
see an abnormality on MRI, an operation to remove that
abnormal area of brain can get rid of most seizures, and
many children can even stop taking medications if they
have had no seizures for a year.
Specific types of surgery include:
Temporal lobectomy: Part of the temporal lobe of
the brain (an area of the brain behind the eyes and
just above and in front of the ears) can be scarred
from early brain injuries or infections. This area of
the brain is often the cause of symptomatic seizures.
Removal of the scarred area of thetemporal lobeis
the most common operation done to control or
eliminate seizures. This area of the brain is involved
in memory. Temporal lobectomy needs testing by
a neuropsychologist to determine how much risk
there might be to memory after surgery. The type
of memory loss can sometimeslead to difficulties
in school, or may have minor impact on memory. It
does not cause your child to forget who you are.
Focal resection: When seizures are coming from an
area of the brain that didnt form properly, seizures
38
are often difficult to control with medications.

Removal of this part of the brain can be very
successful in controlling seizures, depending on the
size of the abnormal area. The normal functions of
the brain have often moved away from this area and
are not affected by surgery.
Tumour resection: When seizures are caused by a
brain tumour, removing the tumour can often stop
the seizures.
Corpus callosotomy: Children who have
generalized seizures that are not coming from one
part of the brain can sometimes have something
called drop attacks. This is where the body loses all
muscle control without any warning and children
fall and can often have broken bones or other
injuries. Sometimes the surgeons will cut the
connection between the two sides of the brain (the
corpus callosum) to stop the rapid spread of the
seizure and prevent drop attacks.For these children,
they will continue to have seizures and require
medication, but hopefully the drop attacks stop and
the children are at less risk of serious injury.
Hemispherectomy: Children who have seizures
coming from a large area of the brain, may have
dozens of seizures every day that cannot be stopped
with medications. For these children, we may
consider a very aggressive operation to disconnect
the side of the brain causing seizures. This
operation causes weakness on the opposite side of
the body, but children are still able to walk and even
run with a limp.
Reference:
Epilepsy Health Center, webmd.com/epilepsy/
guide/types-of-seizures-their-symptoms,
reviewed January 23, 2014.
The Compass
HYDROCEPHALUS
Hydrocephalus is one of the most frequently seen

problems in a pediatric neurosurgical department.
Hydrocephalus is frequently referred to as water on the
brain but it is actually more like a build-up of cerebral
spinal fluid inside the brain.
Our brain is constantly producing a fluid called CSF or
cerebrospinal fluid. CSF flows around the brain and spine.
A certain amount of fluid is reabsorbed by the brain but
the remaining CSF will travel through the ventricle to the
fourth ventricle at the base of the brain where it will exit.
Hydrocephalus happens when something has occurred
to prevent the flow of the CSF. When this occurs, there is
a build-up of spinal fluid in the brain, which can lead to
injury or even death if not treated.
What causes hydrocephalus?
Hydrocephalus usually results either from:
An imbalance between CSF production and absorption
(communicating hydrocephalus). This is often seen
with meningitis and subarachnoid hemorrhages
A blockage within the ventricular system, such
as a tumour, that prevents CSF from circulating
(obstructive hydrocephalus)
While many cases have no clear cause, the following
have been associated with the development of
hydrocephalus: bleeding, infection, trauma, tumours,
vascular problems and structural problems.
What are the symptoms of hydrocephalus?
Hydrocephalus is commonly diagnosed in utero by
ultrasound or fetal MRI. For babies, pediatricians or
public health nurses may identify a rapidly enlarging
head circumference or full fontanelle (soft spot),
the infant may or may not have symptoms such as
vomiting, failure to thrive, irritability and delay in
meeting developmental milestones.
Older children with hydrocephalus will most likely be
associated with a trauma or brain tumour. Symptoms
include severe headache, nausea, vomiting and decreased
level of consciousness.
The Compass
How is hydrocephalus diagnosed?

Either a CT scan or MRI scan can be used to diagnose
hydrocephalus. Neurosurgeons may choose to order
an MRI scan because this scan offers more detailed
pictures which may help identify the possible cause of
the hydrocephalus.
View CSF shunt section (page 41) to see what
hydrocephalus looks like on an MRI, CT and FISP scan.
Treatment of hydrocephalus
If progressive hydrocephalus is diagnosed, almost all
cases require surgery.
If there is a mass in the brain, such as a tumour or cyst
that is disrupting the flow, it is sometimes possible to
remove the mass and allow for normal flow of the CSF. If
the blockage cannot be removed, a shunt may need to be
inserted to help move the fluid out of the ventricle to other
sites of the body, such as the abdomen, chest or heart. The
most common operation is a ventriculoperitoneal shunt.
Another common operation used in many pediatric
neurosurgical centres is an endoscopic third
ventriculostomy (ETV).
An ETV is a hole that is created in the floor of the
third ventricle, like creating a new drain in the bottom
of a plugged sink. This procedure is most successful in
older children with non-communicating hydrocephalus.
The advantage of this procedure is it may avoid the
implantation of a foreign body. Like a shunt, however,
there is also a chance that the ETV can seal over and the
hydrocephalic patient may become symptomatic again.
FAMILY EXPERIENCE: I remember sitting in the
community health clinic and the nurse being worried as
she looked at my sons head measurement and plotted it
on the head growth chart. His head size was going up so
quickly. I knew something was wrong.
39
A shunt is a tube, placed in by a neurosurgeon, that

allows the fluid to flow through it. A valve regulates
the flow of the fluid. Most shunts are used to divert
cerebrospinal fluid from one location to another.
Mostly, shunts have three pieces: a proximal catheter, a
valve mechanism (the bump under the skin on the head
that may be located at the top or back of the head) and
a distal catheter. The neurosurgeons at the Stollery are
very experienced with shunts. It is important to avoid
constipation with shunts, as it increases the pressure
in the abdomen, making it difficult to drain CSF from
the brain.
Shunt types
Cerebral shunt: Some children have increased
fluid around their brain or conditions that cause
increased intracranial pressure. In these children, a
one-way valve is used to drain excess fluid from the
brain and carry it to other parts of the body. A oneway valve means the fluid can only travel one way:
out of the brain. This valve sits outside the skull, but
beneath the skin.
Lumbar-peritoneal shunt: This is a tube or shunt
with a one-way valve that is used to drain the
spinal cerebrospinal fluid and transports it to the
abdomen. This shunt is usually inserted in the lower
back (lumbar area). It then runs beneath the skin to
the abdomen, and eventually to the abdomen (belly)
where it gets absorbed.
Shunt Type
Ventriculo-peritoneal (VP) shunt: Inserted into the
ventricle of the brain and drains into the peritoneal
cavity (abdomen)
Ventriculo-atrial (VA) shunt: Inserted into the
ventricle of the brain and drains into the right
atrium of the heart
Ventriculo-pleural (VPL) shunt: Inserted into the
ventricle of the brain and drains into the pleural
space (chest)
Lumbar-peritoneal (LP) shunt: Inserted in lower
back (lumbar) spinal subarachnoid space and drains
into the peritoneal cavity
DATE OF SURGERY/CHANGE
40
VALVE
1.23 Shunt
Charles Burke
CSF SHUNTS
1.24 Shunt types
GOOD TO KNOW: If the shunt is placed in the lumbar area

of the spine, the bump from the valve will be on the back
next to the spine.
TIP: A simple way to prevent shunt infections is to cut
your childs fingernails! Children will often scratch at
their shunts and, if the scratch is deep enough, their
shunt can get infected.
TYPE OF SHUNT
SHUNT SETTING
The Compass
If your child has a programmable shunt, a

neurosurgeon may need to reprogram it after the
MRI is complete. An MRI machine uses a magnetic
field, which may change the setting of your
childs shunt. New programmable valves are being
developed so that reprogramming is not necessary
after an MRI scan.
Children with programmable shunts should stay
away from strong magnets. Toys like Thomas the
Train have very weak magnets and are okay, but
there are many strong magnetic devices on the
market to avoid.
Tests and scans used for shunts
Shunt series: These are x-rays used to examine the
tubing. They help identify if there is a disconnection
or a breakage.
MRI scans: There are two types of MRI scans. First,
there is a fast head MRI (FISP), which takes about
30 seconds, and your child will be awake. Parents
can accompany child if required. This scan is used
to determine if there is a change in the size of the
ventricles. Second, a full MRI is a more detailed MRI
that can take 30-60 minutes and examines the CSF
flow as well as the brain itself. Sedation is frequently
required for small children.
What are they looking at?

Here is the picture of a normal brain MRI.
In the middle of the brain youll see a darkened
thin shape that resembles bat wings. This is the
ventricle system of the brain.
Now, look at the views below that show
hydrocephalus on a CT, MRI and fast head MRI
(FISP scan or fast head). In hydrocephalus, you can
see how the ventricles (bat wings) are much bigger
than in a normal brain, and now resemble a butterfly.
1.26 Hydrocephalus on a CT
GOOD TO KNOW: Neither kind of MRI has radiation.

CT scan: a quick scan, useful in looking at the
tubing of the shunt in the brain as well as in
identifying any bleeding or blood in the ventricle.
1.27 Hydrocephalus on a MRI
1.25 Normal brain MRI
The Compass
1.28 Hydrocephalus on a FISP sequence
41
Doctors will compare older and new CT or MRI films

to assess if the ventricles are remaining stable in size or
if they have changed. This information, along with your
childs symptoms, allows the neurosurgical team to know
if there is a problem with the functioning of the shunt.
Shunt tap
Most shunt valves have a small dome or bulb reservoir (this
is the bump you see under the skin) designed to sample
CSF by inserting a small needle under sterile procedure by
a neurosurgeon or NP. This procedure is done to relieve
pressure in urgent situations or to test for infection.
The Stollerys neurosurgery team identified some signs and
symptoms of shunt malfunction or infection to watch for:
Signs and symptoms for infants
- Enlargement of babys head
- The soft spot at top of head is full and bulging
- Prominent scalp veins
- Swelling around shunt
- Vomiting
- Irritability
- Sleepiness
- Not eating or drinking
- Redness along shunt tract
- Downward gazing of the eyes
- Fever
- Seizures
Signs and symptoms for toddlers
- Head enlargement
- Vomiting
- Headache
- Irritability
- Sleepiness
- Loss of previous ability
- Swelling on shunt tract
- Fever
- Seizures
Signs and symptoms for children and adolescents
- Vomiting
- Headache
- Vision Problems
- Irritability and/or fatigue
- Personality changes
- Loss of coordination or balance
- Swelling at shunt
- Difficulty at waking up or staying awake
- Decline in academic performance
- Seizures
- Fever
- Redness along shunt
You may be hesitant to seek medical attention out of
fear that you are overreacting to your childs symptoms.
42
Children with shunts can get sick very quickly, so its

better to be safe than sorry. This may result in some
ER visits where they are seen, assessed and sent home
with the assurance that everything is fine. By having
your child assessed properly when symptomatic, when
your childs shunt fails they will receive the life-saving,
prompt medical attention they require.
Shunt revision
When a shunt needs to be replaced it is called a
shunt revision. There are many reasons a shunt
needs to be revised:
Infection
A
blockage in the shunt system
T
he shunt is over or under draining for the needs of
the child
T
he catheter is no longer in an ideal position
T
ubing is broken
This is an example of a ventricular catheter (shunt) that
has failed due to the in-growth of the choroid plexus,
which is like the seaweed of the brain that creates the
cerebrospinal fluid. It can plug the catheter and prevent
CSF from entering and draining.
1.29 Failed ventricular catheter (shunt)
Signs and symptoms after a shunt insertion or revision

After a shunt operation, you need to watch for infection
or shunt malfunction. Seek medical help if you notice
any of the following:
Fever (greater than 38 C)
Redness, swelling or pustules along shunt
Intense abdominal (tummy) pain
Headache after first seven to 10 days
Unusually tired and/or irritable
Vision problems
Fluid collecting or leaking along shunt tract
Bulging at the valve on the head
Seizures
Reference:
Toporck, C. & Robinson, K. (1999).
Hydrocephalus: A Guide for Parents, Families and
Friends. OReilly and Associates Inc.
The Compass
INTRACRANIAL HEMORRHAGE (ICH)
Many children will be seen by a neurosurgeon if they

have evidence of bleeding within the skull called
intracranial hemorrhage. There are four types of ICH.
Epidural hematoma is blood accumulated between
the skull and outermost covering of the brain.
(Hematoma is an accumulation of blood that is on
the outside of a blood vessel not inside.)
Subdural hematoma is blood accumulated on
the surface of the brain between the dura and
arachnoid mater.
Subarachnoid hemorrhage is bleeding between
the brain and thin tissue that covers the brain. It

usually presents with a sharp, sudden headache
and can be accompanied by stiff neck, vomiting,
altered consciousness and seizures. The headache
is frequently in the back of the head or only on one
side.
Intracerebral hemorrhage is bleeding within the
brain itself. It may be intraparenchymal (bleeding
in brain tissue) or an intraventricular hemorrhage
(bleeding into the ventricles of the brain).
INTRAPARENCHYMAL HEMORRHAGE
SUBDURAL HEMORRHAGE
INTRAVENTRICULAR HEMORRHAGE
1.30
The Compass
Charles Burke
EPIDURAL HEMORRHAGE
43
Causes of ICH?
The most common cause of blood inside the skull is
trauma. This trauma may be as natural as the birth of
your child on one extreme to a car collision on the other.
Diagnosing ICH
Important questions that you and your neurosurgeon
will be trying to answer include:
How much unwanted blood is inside the head
and does it need to come out? (This is because the
blood is impairing brain functioning or significantly
increasing the pressure in the brain.)
What compartment is the blood in: one of the
coverings of the brain or within the brain substance?
What is the cause of the bleeding, trauma,
underlying conditions or medication?
Does your family have a history of bleeding disorders?
What is the chance that the bleeding will happen again?
1.31 CT scan showing bleeding in the brain tissue (intraparenchymal)
MOYAMOYA DISEASE
Moyamoya disease is a rare condition that primarily

affects children. The walls of the major intracranial
blood vessels that supply the brain gradually narrow,
restricting or blocking the blood flow. The body
attempts to form collateral blood vessels to the brain
that try to nourish the brain with enough blood supply.
The term moyamoya means puff of smoke and
was described by the Japanese as a descriptive term
for the new small blood vessels that are formed in
the condition.
What causes moyamoya disease?
The exact cause of moyamoya disease is unknown.
We do know that in some children one side or both
sides of the brain can be involved. We also know
that children with certain conditions are more
likely to develop this syndrome (neurofibromatosis
type 1, cranial irradiation, sickle cell anemia, Down
syndrome)
44
Your doctor will use many clues to solve these

problems. The way the problem is solved is through
history taking, blood work, assessing various pictures of
the brain (CT, MRI, MRA, CTA or cerebral angiograms),
surgery or time.
The outcome for patients depends on many factors
such as the extent of the bleed, how quickly it was
treated and complications.
Reference:
Intracranial Hemorrhages by Elea Carey,
published on July 30, 2012 healthline.com/
health/extradural-hemorrhage; Oliver, Z. (n.d.).
Intracranial hemorrhage.CDEM Study Modules,
retrieved April 2 2014 from cdemcurriculum.org/
ssm/neurologic/ich/ich.php
1.32 CT scan showing a child with a subarachnoid hemorrhage
What are the symptoms of moyamoya disease?

The symptoms of moyamoya disease are related to the
part of the brain that is affected by the blockage of the
vessels. In children, the first symptom of moyamoya
disease is often stroke, or recurrent transient ischemic
attacks (TIA, commonly referred to as mini-strokes).
Occasionally one can get a bleed in the brain, but in
children ischemic strokes are much more common.
Some children will present the disease with
weakness or paralysis to one side of the body, severe
headaches, speech problems, seizures, poor balance and
involuntary movements.
How is moyamoya disease diagnosed?
Computed tomography (CT), magnetic resonance imaging
(MRI), magnetic resonance angiography (MRA) and
cerebral angiogram scans will help diagnose the condition.
A cerebral angiogram will often show a blockage of the
intracranial internal carotid artery with the development of
The Compass
1.33 Cerebral angiogram demonstrating moyamoya pattern of the blood vessels
an abnormal network of blood vessels (the puff of smoke).

On occasion, children will have only one side of the
brain involved. In addition, your surgeon may also do
some more specific tests of the brain to see if any of
the brain tissue is at risk for future strokes. In various
centres, the medical team may use different types of
tests to accomplish this (CT perfusion, MRI perfusion,
SPECT, PET).
SPINA BIFIDA
Spina bifida is a common term that may describe

an incomplete closure of the spinal column or the
neural tube. There are three types of spina bifida:
spina bifida occulta, spina bifida with meningocele,
and spina bifida with myelomeningocele. In addition
to this there are a group of disorders where the
skin is closed but the underlying spinal cord has an
abnormality. These disorders are called occult spinal
dysraphism (OSD) and involve a different problem
with embryology.
Spina bifida occulta (SBO) is a very common
disorder where the back of the spinal canal is not
completely closed and has no clinical concerns and
for which treatment isnt necessary. They are other
groups of conditions that are sometimes under
this category that we have included in a separate
category called occult spinal dysraphisms (OSD).
Spina bifida with meningocele (SBM) is a condition
where the covering of the spinal cord protrudes
or pouches through the spinal bones. This pouch
contains spinal fluid and is usually associated
with minor physical impairments or no physical
impairments at all.
Spina bifida with myelomeningocele (SBMM)
is similar to a meningocele but the sac of fluid
also contains parts of the spinal cord and
nerve roots. This is the most severe form of
spina bifida and may be associated with other
neurological complications such as hydrocephalus,
The Compass
Treatment of moyamoya disease

Neurosurgeons may perform a revascularization
procedure for the affected brain. Revascularization
operations are generally classified as direct or indirect.
For children with small vessels, an indirect approach is
used. In one of these operations (pial synangiosis) an
extracranial blood vessel is rerouted intracranially to
help supply that side of the brain with more blood.
These revascularization operations are generally well
tolerated. The main risk, with and without any surgery,
is stroke.
Other treatments for moyamoya disease address only
its symptoms or effects. For example, children at risk
of stroke may be treated with blood thinners and those
at risk of hemorrhage may be treated with high blood
pressure drugs.
Reference:
ninds.nih.gov/disorders/moyamoya/
moyamoya.htm and wikipedia.org/wiki/
Moyamoya_disease, reviewed on April 19, 2014.
syringomyelia, and Chiari type II malformations.

The majority of children will have bowel and
bladder trouble, difficulty with walking, spinal
problems, and may have breathing or swallowing
difficulties. To learn more about syringomyelia,
hydrocephalus and Chiari visit the write-ups about
them in this section of the book.
What causes spina bifida?
The exact cause of spina bifida is unknown but
environmental and genetic factors may play a role.
Some studies show that low levels of folic acid in the
mother during pregnancy may lead to an increased risk
for the condition.
How is spina bifida diagnosed?
SBM and SBMM are usually diagnosed on a prenatal
ultrasound or fetal MRI. A screening blood test done
on pregnant mothers may also show a high level of
maternal alpha fetal protein (AFP). Occasionally no
abnormality is recognized until birth, in which case it is
diagnosed by physical exam.
SBO can be a more difficult diagnosis. Often an
ultrasound or MRI of the spine are used to detect
the underlying SBO. A thorough history and physical
examine is necessary to determine if the SBO is
symptomatic or not. Neurosurgeons may order a test
called urodynamics to determine if the bladder function
is being affected by the condition.
45
Treatment of spina bifida

Treatment of spina bifida varies greatly depending on
the type. SBMM may require relatively urgent surgery
at birth in order to place the spinal cord back into the
spinal canal with adequate layers of covering. If the
pouch is leaking fluid at birth then it will be covered
with a sterile dressing and the initial operation to close
the back will usually occur a very short time after birth.
If the pouch is not leaking fluid, then the surgery will
usually occur within 48 hours after delivery.
A baby with SBMM may also have a shunt inserted
at the same time as the closure of the back if they have
significant hydrocephalus. If the hydrocephalus is mild
to moderate, then the baby will be watched closely for
signs of increasing hydrocephalus over the next several

days or even weeks. Other surgeries may be required
to treat a symptomatic Chiari II malformation. Bowel,
bladder and orthopedic issues usually occur later in
life. Please see the sections on Chiari malformation and
hydrocephalus for information on these conditions.
Treatment of a baby with SBM again depends on if the
sac is leaking fluid or not. If the sac is leaking fluid then
the surgery will occur shortly after birth. If the sac is skin
covered, and thus well protected and not leaking fluid,
then the surgery may be delayed for hours or even weeks
after birth depending on the size of the pouch. Babies
with SBM will rarely require other surgeries such as the
insertion of a shunt or a Chiari II malformation operation.
SYRINGOHYDROMYELIA (SYRINX)
Syringohydromyelia is a term often used in radiology

reports to describe a condition where excess
cerebrospinal fluid is present within the spinal cord.
Often this condition may be termed as a syrinx.
Your physician will focus on important points in
the history, physical exam and radiographic studies of
your child.
History:
Does your child have back pain?
Does your child have any weakness or numbness in
the arms or legs?
Does your child have any headaches?
Does your child have any curvature in their spine?
Does your child have any problems with their
bladder function?
Is there any history of spinal trauma or spinal
infections?
Physical exam
Is there any evidence of an abnormal neurological
exam?
Is there any scoliosis?
Are the feet the same size?
MRI imaging
Is the syrinx large or small (a few millimetres)?
Is the spinal cord expanded?
Are there any abnormalities at the cranio-cervical
junction?
Is there any evidence of a low-lying spinal cord?
Has the syrinx been growing?
How is a syrinx diagnosed?
MRI scans have been very beneficial in improving
the ability to both detect and closely monitor these
collections. Once a fluid collection is identified, it is
usually prudent to image the entire nervous system to
look for associated abnormalities.
46
1.34 Example of a cervical thoracic syrinx
What causes syrinx?

The exact cause of syringohydromyelia is unknown.
On many occasions the syrinx may be the result
of abnormal spinal cerebrospinal fluid dynamics.
This condition may be idiopathic (no known
cause), or secondary to trauma, hydrocephalus,
Chiari malformation, tethered spinal cord, and an
intramedullary spinal cord tumour.
What are the symptoms of syrinx?
Most children with a syringohydromyelia are
asymptomatic and are diagnosed incidentally
during a neuroimaging procedure. Symptoms of a
syringohydromyelia may be due to the direct pressure
on the spinal cord from the fluid collection. Therefore,
the symptoms will be related to the level in the
spinal cord where the syringohydromyelia is located.
Common symptoms include weakness, numbness, pain,
incontinence and scoliosis.
The MRI image above demonstrates a cervicalthoracic syringohydromyelia.
The Compass
Treatment of syringohydromyelia
If the syrinx is creating symptoms, the first treatment is
to address the underlying cause of the syrinx. If there is
a Chiari malformation or a tethered cord that is causing
the syrinx, then the underlying cause will be treated.
In the majority of cases the syrinx does not direct
treatment. If your child has a small thoracic syrinx
with no symptoms the neurosurgeon may elect to
follow your child with repeat physical exams and/or
neuroimaging.
Direct treatment of the syrinx can involve
redeveloping a normal spinal subarachnoid space or

draining the syrinx to the spinal subarachnoid space or
via a shunt construct to the pleural or peritoneal space.
Direct tubes in the spinal syrinx can be problematic
due to blockage, migration or infection. There is no
one superior treatment and the neurosurgeon will
determine which will be indicated in your childs
specific condition. The surgeries are typically well
tolerated and in many cases, children recover fully.
Follow-up MRIs will likely be performed after the
surgery.
OCCULT SPINAL DYSRAPHISMS (OSD)/ TETHERED CORD

These disorders involve a problem with the
development of the bottom part of the spinal cord and
often occur in children with other problems in the
urogenital and rectal development.
How is a tethered spinal cord diagnosed?

Doctors are trained to look for clues that these
conditions may widen.
Taking a medical history: The doctor will ask if
your child has had an imperforate anus, urinary
tract infections or kidney problems.
Physical exam: The doctor will look for
abnormalities in the skin of the lower spine,
such as subcutaneous fat, eccentric gluteal fold,
hemangioma, tuft of hair, dermal sinus and dimples
above the buttock crease and dorsal appendage.
It is important to note dimples deep in the crease of
the bum of an infant are common and often are not
associated with OSD. A health care practitioner can
properly assess the dimple and determine if further
tests are warranted.
Often an abnormality of the spine, such as a tuft
of hair, red patch or dimple is noted on the physical
examination of an infant. Health care professionals may
then order an ultrasound or MRI of the spine.
When this condition exists the doctor will try to
determine if the spinal cord is tethered. A tethered spinal
cord shows up on the MRI and/or a physical exam.
Different abnormalities can cause a tethered
spinal cord and you may hear terms like fatty filum,
lipomyelomeningocele, terminal lipoma, split cord
malformation and dermal sinus.
The Compass
What are the symptoms of a tethered spinal cord?

Symptoms of a tethered spinal cord can include leg
pain, back pain, trouble potty training or in older kids
a new onset of accidents that can be both bladder and
bowel in nature. Children may also develop orthopedic
problems such as a foot that turns in or toe walking.
Often a child may get a urodynamics test. Doctors
insert a catheter into the bladder of the child and slowly
fill the bladder to see how much it can hold, and how
efficiently it can empty the water.
An abnormal urodynamics will more likely lead to
the recommendation of surgery. Normal urodynamics
will often result in a more wait-and-see approach to the
problem.
Treatment of a tethered spinal cord
If a tether is found there may be a controversy if
surgery should be done. For example, if a fatty filum is
found and the spinal cord looks tethered some health
care professionals will advocate to surgically treat
the condition by cutting the band of fat. Others will
advocate a more conservative approach with multiple
visits to ascertain if the child has become symptomatic,
recognizing that many children will never go on to need
surgery.
Ultimately the doctors (neurosurgeons, urologists,
orthopedic surgeons, physiatrists) consult with the
parents to develop an individualized plan based on the
age of the child, what type of tethering agent exists and
the clinical exam of the child.
47
Notes
48
The Compass
The Compass
49
Notes
50
The Compass
CHAPTER 2:
Hospitalization & Surgery
Illustration by PETE RYAN
Chapter 2: Hospitalization & Surgery

53

SECTION 2.1: PREPARING FOR ADMISSION

Talk to your child
Pre-admission clinic (PAC) visit before surgery
Packing checklist
55

SECTION 2.2: VISUAL SCHEDULE

My neurosurgery operation at the Stollery Childrens Hospital
58

SECTION 2.3: HOSPITALIZATION

Pain and pain medications in hospital
Resources in hospital
Accommodations
63

SECTION 2.4: GOING HOME

Wound care and complications
Taking medications
Helpful hints
Preparing for outpatient clinic
68

SECTION 2.5: REHABILITATION

Glenrose rehabilitation
Orthotist directory
70

SECTION 2.6: PROFILES

Medical profile
Medic alert identification and jewelry
Hope stones
CHAPTER 2:
Hospitalization and Surgery

You have just received news that your child
will require brain or spinal cord surgery.
Now what? Thinking clearly can seem almost
impossible at this time.
This section gives you information that will
assist you on the next steps of your journey,
preparing for and staying in the hospital.
You will find information on how to
emotionally prepare for surgery, what to pack,
what to expect in the hospital, resources
available and how to advocate for your child
during this delicate time.
TIP: If your child is scheduled for

routine immunizations please discuss
this with your medical team. Some
immunizations can have a delayed
reaction like a fever or rash, and this
could make it challenging for the surgical
team to know whether it is an immunization
reaction or a postoperative surgical issue. They
may suggest postponing immunization until after
surgery and recovery.
SECTION 2.1 PREPARING FOR ADMISSION

We know that coming to the hospital for surgery is a big event for you and your child. Take the time to talk together
before coming it will help prepare both you and your child.
TALK TO YOUR CHILD
Here are some tips to help your child feel safer about
their upcoming surgery and hospitalization:
Take the time to listen to your child and let them
express their feelings about the upcoming surgery.
Plan for some quiet time together.
Be honest about what will happen, all the while
reassuring them.
Use short, simple words or sentences appropriate
for your childs level of understanding.
Reassure your child that if something hurts, there
are ways to help the pain, including medicine,
relaxation, listening to music and playing games.

Ask your child to pick out a favourite stuffed animal,
book, or some music to bring to the hospital.
Encourage your child to ask questions and talk
about their fears or worries.
Stay with your child if possible. If so, reassure your
child that the Stollery has beds for parents to sleep
beside their children on the ward. If you cant stay,
reassure your child that you will come to visit often.
Reassure your child that having to go to the hospital
does not mean they have done something wrong.
PRE-ADMISSION CLINIC (PAC) VISIT BEFORE SURGERY
If your surgeon decides a pre-admission clinic visit is

required, you will be contacted by the hospital staff
prior to your childs surgery. The PAC is located in the
University of Alberta Hospital in unit 1C3 and the
phone number is (780) 407-6890. It is located on the
main floor next to the Rexall.
During this appointment, you and your child will
meet with a variety of health care professionals who will
be involved in your childs surgery and hospitalization.
The clinic staff will provide you with preoperative
instructions including when to stop feeding your child,
The Compass
the time to arrive at hospital the day of surgery and any

other special instructions. Expect this visit to take up to
four hours as your child may need tests such as blood
work or scans. Please pack any food, drink, formula,
toys, iPads or books that your child may need during
waiting times.
It is very important to follow all of the instructions
that you were given. Your child must not eat or drink
anything prior to surgery. This is for your childs safety
during the operation. Every childs surgery is different,
so follow the directions closely.
53
Prepare for Admission
If your child takes medications on a regular basis,

please follow the instructions given to you at your
PAC visit. If you need to call and ask again, please call
(780) 407-6890 during business hours.
If your child is having anxiety about the upcoming
surgery, ask the nurse in PAC to contact Child Life.
Child Life is a great resource to help children gain a
better understanding of their upcoming surgery by
using props like dolls.
A warm bath or shower and shampoo are a good idea
the night before surgery. In the preadmission clinic you
may receive special wash to use. Your child may wear
pajamas to the hospital; however, they may be asked to
change into a hospital gown. The best pajamas to wear
in hospital are button-down tops as your child will have
an IV in their arm.
During your childs surgery, you will be updated
as to how things are progressing by the pediatric
neurosurgery nurse practitioner whenever possible.
Please provide the NP with your cell phone number as
this is the easiest way to stay in touch. Dont forget to
charge your cell phone.
Finally: your child is in the best possible hands,
and we promise to take excellent care of them. Please
remember, neurosurgery always takes time and a long
surgery doesnt mean that something is wrong.
PACKING CHECKLIST
Consider labelling all items and be cautious of bringing things

that are very valuable. The hospital is not responsible for lost or
stolen items.
Button-down pajamas (two pieces)
Underwear
Slippers
Toothpaste
Shampoo
Brush and hair accessories
Hair dryer, if needed
Eye glasses or contacts and solution
Favourite blanket or pillow (optional)
IMPORTANT:
Clear fluids are liquids you can see
through, such as apple juice, water
and ginger ale.
REMEMBER: no milk and no orange
juice. These are not considered clear fluids.
NPO (Nil per os) means nothing by mouth:
no food or drink.
Your childs surgery day or time may be
changed due to unforeseeable reasons,
such as your childs surgeon being called
to an emergency.
54
Toy, stuffed animal, or electronic toys like an iPad

Spare change for vending machine or store
Health cards
Medications (yours and the childs)
Cell phone and chargers
Journal, diary and pen
Books or magazines to read while waiting
Your copy of The Compass
The Compass
SECTION 2.2 VISUAL SCHEDULE

My neurosurgery operation
at the Stollery Childrens Hospital
1. AT HOME
2. WHEN I ARRIVE AT THE HOSPITAL
When I get up, I MUST NOT eat or

drink before I go to the hospital.
I will go to Pre-Admission
Clinic 1C3.
I will check in at the registration
desk. I will get an ID band to put on.
For my safety, I need to keep this
band on.
I may have to wait. There

will be other children and
families waiting too! I can bring
something to do while I wait.
There are also books that I can
read and movies for me to watch.
3. GETTING READY FOR THE OPERATION
I will meet my
nurse. She will
help me get ready
for my operation.
The Compass
The nurse will

measure how
tall I am and how
much I weigh.
I will be shown to a
room to get ready.
I will change
into hospital
clothes.
Next I will have

my blood pressure
taken. I need to
stay very still.
55
Visual Schedule
3. Getting ready for the operation (continued)

Then, I will have my
temperature taken.
Next is the band-aid
with the little red light.
This goes on my finger
to check how I am
breathing. I must not
wiggle my finger.
T
he nurse will put
magic cream on my
right and left hands.
The cream is covered
by a clear band-aid.
The magic cream may
make my skin tingle.
I cannot touch the
magic cream.
4. IN THE OPERATING ROOM
I will lie down on the bed.

The operating room is a very busy
place. The lights are very bright.
This bed is very tall and
There will be people wearing green
I may need help climbing
gowns, hats and masks. It can be very into the bed.
noisy in this room too!
When I go to the operating room,
I will meet the anesthesiologist
(an-es-thee-z-all-o-gist).
He is the sleepy-medicine doctor.
I may need to breathe sleepy

air from a mask. Dont worry, it
smells sweet, like strawberries!
I will go to sleep for a while.
While I am sleeping, my family
will be waiting for me.
A tube will be put where the

magic cream is. It will not hurt.
This tube is for water and medicine
that I need for the operation.
This is called an intravenous or IV.
When it is safe for me, I will go

to the unit that I will stay in:
Unit 4D, or intensive care.
I must lie very still and stay on
the bed while it is moving.
56
After the operation, I will go to the

recovery room (or wake up room).
Special nurses will take care of me
while I am sleeping. I may feel dizzy
or sleepy when I wake up. I will help
the nurse by staying very still and
not pulling at my tubes.
The Compass
Visual Schedule
4. In the operating room (continued)
I will know I am arriving at the

unit 4D because there are fish
and dolphins on the roof.
I can see my family now.
I will most likely need to have

my blood pressure and breathing
monitored. Thats what the
screen in the back is. I might
have an IV pump to help give me
medication.
I can just relax. There is a TV

at my bed with lots of channels
to watch.
The nurses and health team on the

units are really, really nice. They
will take good care of me. They will
tell me when I can eat and drink
again. I need to make sure I tell my
nurse if I have pain. They can help
make it feel better.
When the doctor says I can go

home, the nurse will remove the
medicine tube from my hand.
I can pick out a band-aid.
I will change back into my clothes

and I can go home. My family will
get information on taking care of
me at home. I need to rest and
get better!
Visual schedule courtesy of Lillian Mah, RN.

Stollery Pediatric Day Ward/Pre-Admission Clinic
The Compass
57
SECTION 2.3 HOSPITALIZATION

During your visit to the pre-admission clinic, you will receive a time for your childs operation and a time that they want
your child in hospital. It is important to be on time take into consideration the weather, traffic and parking.

The main public parkade is located on 83 Avenue between
112 Street and 114 Street. There is a covered pedway on
the fourth level that leads directly into the hospital.
Underground parking and meter parking is also available.
Please bring your child to 1C3, the pre-admission clinic.
You can leave your childs bags in the car because your
child will not have a room assigned to them yet. You will
have time to get these later. Bring a small bag of items that
will help keep your child calm or occupied during the wait.
First, staff will ask you to help your child change into
a hospital gown or hospital pajamas. Next, medical staff
will take your childs vital signs, like blood pressure and
temperature, and administer a pre-medication and a
cream on the back of your childs hands. This cream
numbs the skin where the intravenous (IV) needle goes
in, so it wont pinch. You will be allowed to stay with your
child right up to the time of surgery until they are taken
into the operating room (OR). If your child would like
you to come into the operating room with them, ask the
anesthetist. When possible, they will try to accommodate.
In the OR, medical staff will insert the IV and attach it
to a clear bag of saline solution. This will keep your child
hydrated and the anesthesiologist will use it to deliver
medications to your child before and during surgery. As
soon as your child is anesthetized (asleep), staff will escort
you out of the OR.
A good time to grab something to eat is immediately
after your child has gone into surgery. The best place to
wait is outside of the unit that your child is expected to go
PAIN AND PAIN MEDICATIONS IN HOSPITAL
Managing pain in the hospital is a major priority for the

medical team. There are a variety of methods the team
can use to make sure your child is comfortable. The two
most commonly used methods in neurosurgery are:
Intravenous route: This method of pain management
uses the IV line that medical staff inserted prior to
surgery. The anesthesiologist or nursing staff uses it to
administer pain medications directly into your childs
vein. Medications like morphine are common and are
effective in controlling many types of surgical pain.
Pain medications can safely be given as needed or via a
continuous drip.
58
to after the surgery. There are awaiting areas outside 4D

and PICU.
Medical staff will take your child to the recovery room
after surgery. Staff in the recovery room will make sure
your child is stable, awake and comfortable before they
transfer them to the assigned unit.
The Stollery Childrens Hospital has limited private
rooms. Most patient rooms have two beds in each. Each
patients bedside has a single bed for one parent to stay 24
hours per day. There is a TV at each patients bedside and
a bathroom in each room. Please be considerate of noise
level and number of visitors.
Your child may go to the ICE room after surgery, which
is a step down from the ICU room, where there is one
nurse for every two patients.
Your child may also go to the PICU/NICU after surgery,
which is the Pediatric Intensive Care Unit and the Neonatal
Intensive Care Unit, respectively. These units most often
have a one-to-one patient-to-nurse ratio. There are
limitations on the number of visitors in the PICU and NICU,
and it is important to call in at the entrance prior to entering.
IMPORTANT:
Sometimes children can take a bit
of time to wake up in recovery.
ICE stands for Intermediate
Care Environment.
Oral route: Your child may also take pain

medication by mouth if the doctor orders it.
If your child has pain, speak with your nurse. Having
your child comfortable is crucial to their recovery.
IMPORTANT:
Codeine is not for children.
The Compass
Hospitalization
RESOURCES IN HOSPITAL
Most parents would agree that we are very fortunate to

have a specialized childrens hospital in our city.
The Stollery Childrens Hospital has an abundance
of resources for families and patients. Find out here
whats available to you within the hospital during
your childs stay.
The Stollery Family Room: This is located at
WMC 4H2.02. Its a great place to relax, use the
phone or access computers. Theres a fax machine
and a photocopier you can use. There is a beautiful
fish tank to enjoy.
Aboriginal Child Health Program: Contact an
aboriginal care coordinator to learn about services
available to Mtis, Inuit and First Nations patients
and families. The Kaw Kaw Koo Aboriginal
Gathering Room is located at 5H2.04.
Care Pages: This offers families a free and easy way
to communicate with friends and family.
Care pages can be accessed at carepages.com/Stollery.
Writing can be therapeutic and an effective way to
communicate information directly to many people,
without having to repeat it over and over or worry
that you missed someone.
Child Life Programs: These offer services to
help pediatric patients and families deal with
their hospital experience. They offer play programs,
teen support, one-on-one interaction, preparation
and teaching for surgery or procedures. A calendar
of events is outside 4 B1.08 or call (780) 407-6818.
The Stollery Family Centred Care Network:
This is a group of people who are passionate
about family centred care. To join or learn more
email StolleryFCC@albertahealthservices.ca
or call the family room at (780) 407-7255 for
more information.
The Guru Nanak Dev Healing Garden:
This space is on the fourth floor of the
Mazankowski Heart Institute. Its a calming
environment filled with many soothing elements.
The easiest way to get there is to take the
hallway through Unit 4A, past the double doors
and past the elevator; the hallway opens up to
the healing gardens. Its a great place to take a
moment to yourself.
Kitchenettes: Youll find them on patient units.
Theyre stocked with water and ice machines,
toasters and microwave ovens, and snacks for
pediatric patients. Fridge space is limited; all food
must be labelled and dated. Please throw your old
food out.
The Library: Located on the fourth-floor atrium, its
hours are based on volunteer availability.
Parking Office: Its on level zero and is open 8 a.m.
to 4 p.m., Monday to Friday. You can purchase
weekly or monthly parking passes.
The Compass
Patient Relations: If you have questions or

complaints, talk to your health care providers
first. If you cannot resolve your concerns, call
1-855-550-2555 or visit albertahealthservices.ca and
navigate to Patient Relations. There is an online
form where you can register concerns, complaints
or compliments about staff doing a great job.
The Prayer Centre Chapel: Its located at 5H2.06
and it is open to everyone and every faith.
The Rapid Response Team: This is a specially trained
team of health care professionals such as nurses and
respiratory therapists who work in the intensive care
unit but who take special equipment to other areas
of the hospital to help with medical emergencies. If,
in consultation with the bedside nurse, the family
thinks that the childs condition is deteriorating and
the child needs immediate attention, the nurse can
call the rapid response team.
Social Workers: They provide a wide variety
of services to families during hospitalization.
They have an abundance of skills from financial
counselling, advocating, coordinating, and so
much more. They provide assistance beyond the
medical treatment. Each unit has an assigned
social worker. Families can request to see a social
worker at any nursing station, and social workers
can be found in the social worker office WMC
1H1.26 Monday to Friday 9 a.m. until 4 p.m.
Call (780) 407-8871.
Stollery Womens Network: This is a group of
passionate women who have a desire to support
and encourage other women and the Stollery.
Their twitter handle is @StolleryWomens.
59
Hospitalization
T
he Beach: OK, theres no lake. But its a supervised
playroom with activities available for pediatric
patients. Level 4 outside Unit 4C and is open
Monday to Friday. The teen room is open four
afternoons per week.
Wireless Internet: Its available to Units 4C, 4D,
4E, and 4F2. Visit the Family Room at 4H2.02
for a password and username. Wireless intranet
is funded by the Stollery Childrens Hospital
Foundation.
Well Wishes: Family and friends can send Stollery

patients and their families special greetings.
Staff will receive the messages, print, seal then
deliver them to the room within two business days.
Visit albertahealthservices.ca/wellwishes.
Reference: 2012, Alberta Health Services,
Stollery Childrens Hospital Guide to Services
for Patients and Families.
STOLLERY CHILDRENS HOSPITAL MAP
See page 168 for more maps
MAP
SITE
GEN
Walter C. Mackenzie
Health Sciences Centre
87 AVE
Jubilee
Auditorium
Lister
Hall
Edmonton
Clinic
North
Residence
Public Parking
Entrance
WALTER C.
MACKENZIE
HEALTH
SCIENCES
CENTRE
Future Site
Pedestrian/
LRT Crossing
EMERGENCY
Clinical
Sciences
Building
Blood
Donor
Clinic
Staff Parkade
Public
Parkade
Aberhart
Centre
CP
ST
Corbett
Hall
83 AVE
Edmonton Clinic South
Cro
Can ss
Institcer
ute
82 AVE
P
UNIV
ERSI
TY A
VE
IC3 Pre-admission Clinic is located immediately to the right through this entrance
Stollery Childrens Hospital Emergency entrance
The Surgery Clinic is in the Clinical Sciences Building, on the main floor behind the elevators
The parkade and the hospital are connected by a pedway
60
Ped
Ped
84 AVE
OUTPATIENT
RESIDENCE
HEALTH
SCIENCES
LRT
RTF
85 AVE
83 AVE.
117
86 AVE
Zeidler
Ledcor
Centre
The Compass
Courtesy of albertahealthservices.ca
College Plaza
Medical Sciences
Building
117 ST
CP
HRIF
112 ST
OPR Outpatient
114 ST
Building
Heritage
Medical
Research
Katz Group Rexall Centre

for Pharmacy &
Health Research
ABC Aberhart Centre

CSB Clinical Sciences
ABAC
Admi
Admi
Adult
Berna
Cash
Clinic
Clinic
A.H
Adu
Car
De
Fam
Me
Me
87 AVE
Sen
Sur
Cysto
Day S
Day W
Derm
Diagn
EEG
Emer
Endo
Facili
Facul
Food
112
Caf
Caf
He
Mr
Tre
Hospitalization
A FEW IMPORTANT POINTS TAKE NOTE
If your childs condition gets worse, communicate

your concern with the medical professionals a nurse,
nurse practitioner, charge nurse or resident. If you
feel that your concerns are not being addressed you
can request the Rapid Response Team.
Contact a social worker. They are located in the
hospital and any nurse can call one for you. Social
workers are an extremely good resource and can
offer guidance and assistance with everything
from parking and accommodations to government
paperwork such as Family Support for Children and
Disabilities (FSCD).
While in the hospital, ask your bedside nurse
questions. You are not expected to know everything,
and having more knowledge about why they are doing
things might provide comfort to you.
Ask and write down questions and take them to your
appointments or keep them close for doctor rounds
in hospital. Its equally important to understand the
answer and write it down.
While youre in the hospital, you must take care
of yourself. Keep healthy snacks at the bedside and
remember to hydrate, set up respite care so you can go
home and shower, sleep, or visit with other children.
Set up CarePages to keep your family and friends
informed of your journey. Ask your nurse or social
worker for help. CarePages is easy to use.
Before you go home, make sure you understand the
next steps.
Ask about follow-up appointments, supplies you may
need at home and prescriptions. Make sure you know
warning signs for complications.
Make sure you have all your belongings and gather
YOU NEED TO EAT
Mr. Sub
Customized sub sandwiches, snacks and drinks
11 a.m. to 3 p.m., Monday to Friday
112 Street Grill Snack Bar
Burgers, pizza, pasta, drinks, coffee and snacks
10:30 a.m. to 10 p.m., Monday to Friday
6:30 a.m. to 10 p.m., Saturday, Sunday, holidays
Main Cafeteria
Closed on weekends
Caf Fantini
Soups, sandwiches, snacks, specialty coffee
Closed on weekends
Located on the second level by the elevator
Tim Hortons/Wendys
Located outside of the front entrance of the hospital
emergency department entrances
Open 24 hours per day
The Compass
cards from all of the professionals you will be seeing

once you are home.
Ask any visitors with any flu or cold-like symptoms
not to visit for the duration of their illness. Phone calls
and emails are always welcome.
Ask all visitors to wash hands or wear a mask (if
applicable) to protect your child during this delicate
time. There are lots of hand sanitizer dispensers around
the hospital. Know where the nearest one to your
childs bedside is, use it frequently and invite visitors to
use it before visiting your childs bedside.
RESOURCES FOR FINDING A PEDIATRICIAN:
College of Physicians and Surgeons of Alberta,
cpsa.ab.ca
edmontonareadocs.ca
Call Health Link at (780) 408-5465 (LINK)
A hero is an ordinary individual who

finds strength to persevere and endure
in spite of overwhelming obstacles
- Christopher Reeve
Subway
Customized sub sandwiches, snacks and drinks
8511 - 112 Street
Located outside of the main hospital entrance and
across the street
Hours of Operation:
Monday to Friday: 7 a.m. to 11 p.m.
Saturday and Sunday: 9 a.m. to 10 p.m.
B
oth Sobeys and Second Cup are also available
across from hospital.
61
Hospitalization
ACCOMMODATIONS IN EDMONTON
Ronald McDonald House provides accommodation

for out-of-town families with children receiving
treatment in local hospitals. RMH features three
kitchens, heated underground parking, a school
for guests in Grades 1 to 12 and several spaces for
families to gather, all at an affordable rate. RMH
is located at 7726-107 Street NW. Contact Ronald
McDonald House - North Alberta at (780) 439-5437
or rmhnorthernalberta.org for more information
Kids with Cancer Society supports children and
teens with cancer and their families from the
moment of diagnosis, during treatment and after.
Kids with Cancer has a variety of programming
services available such as advocacy and awareness,
child/family support, financial support, research and
more. Kids with Cancer has a house located a few
blocks east from the hospital at 11135-84 Avenue
Call (780) 496-2459 or visit kidswithcancer.ca.
Kids Kottage Foundation helps you support your
other children. At any point during this journey,
if you are having a difficult time managing and do
not have support to help with your other children,
the Kids Kottage Foundation is available. Reaching
out for help doesnt mean youre a bad parent or
unable to deal with the situation you simply need
to focus on your sick child. The aim of Kids Kottage
is to provide families with a bridge from crisis to

calm and to provide a safe home away from home
for children. Some of the services are: support for
families in crisis; safe shelter for children ages zero10 years for up to 72 hours; free of charge; 24-hour
crisis telephone line; stimulating play activities;
positive parenting education; and emergency and
regular respite. The 24-Hour Crisis Nursery is
located at 13308 - 101 Street. Call the crisis line
at (780) 944-2888, the administration line at
(780) 944-HOPE (4673) or visit kidskottage.org.
H
otel Options
Signature Suites Campus Tower Hotel:
11145-87 Avenue NW, Edmonton, AB T6G 0Y1
(780) 439-6060.
- All suites have a kitchenette, full bathroom,
bedroom and living room. Special rates are
available.
There are a variety of other hotel options in the
University and Whyte Avenue area. Outside of The
Family Room (WMC 4H2.02) there is an Alberta Health
Services pamphlet called Lodging. This pamphlet
offers a variety of lodging options that are close to
hospital or provide hospital rates.
Notes
62
The Compass
SECTION 2.4 GOING HOME
Pete Ryan
As difficult as it is to be in the hospital with your child, you may have mixed emotions about going home.
Managing pain, assessing wounds and identifying post-operative complications can all seem very scary and
overwhelming. This section is designed to give you information to help you go home feeling more secure
and confident. It offers you information on home care of a child post-operation, preparing for follow-up
appointments, directions for creating a medical profile and where to get medical alert jewelry.

FOLLOW-UP APPOINTMENT
At the time of discharge, staff will give you a date and

time for a follow-up visit, usually one to two weeks
after your childs surgery date. Mark it down on your
calendar as soon as you get home. If for some reason
you dont have a follow-up booked, contact your
doctors office.
The Compass
You may also be prescribed medication to be used

at home. It is a good idea to have it filled at the Rexall
Pharmacy that is located on the main level of the
hospital. Make sure you have all of your benefit cards
with you. Take all prescribed medication as ordered.
63
Going Home
WOUND CARE
Your doctor or nurse practitioner will give you specific

instructions about how to care for your childs surgical
wound. We have given some general wound care
information below.
A little swelling and pinkness around the incision is a
normal part of healing. Ask your nurse or doctor what
you should look for as signs of poor healing or infection.
Some key signs are increasing swelling, redness, pus, fluid
or leakage, or a wider or splitting wound.
There may or may not be a dressing on the wound.
Do not apply a dressing to a wound unless your doctor
has advised you to.
IMPORTANT!
For serious concerns or emergencies, visit the

Stollery Childrens Hospital Emergency Department,
located at 8440-112 Street.
If you are out of town, proceed to your local emergency
room.
If the physician believes your child needs to be assessed by
neurosurgery, they will transfer your child to the Stollery.
Its safer to have them accompanied by a medical team in
case the condition takes a turn for the worse.
If your childs condition is life threatening, call 911.
If there are steri-strips (small tapes) on the incision,

do not pick at them or pull them off. They will naturally
fall off in one to two weeks. There may be some
dissolvable blue sutures (stitches) in the incision.
Never pull, cut or pick at them as it may take several
weeks to dissolve.
Medical staff will tell you when your child can resume
showering. Most children should not bathe or swim
for at least six weeks until the incision is fully closed
and healed. This is important for infection control and
wound healing.
CALL THE NEUROSURGEON OR NURSE

PRACTITIONER IN CASES OF:
Fever of 38 C or over
(37 C is normal)
Leakage of fluid from incision
Redness, swelling or pus around or from
incision
Vomiting, especially if persistent, severe and not
related to another illness
Headaches, if they are persistent with no relief
and associated with vomiting or if they occur at
the same time every day
Any pain not relieved with Tylenol or Advil
TEMPERATURE AND FEVERS
After your childs operation it is important to monitor

for a fever. Our normal body temperature is about 37 C
or 98 F. Our body temperature fluctuates throughout
the day and tends to be coolest in the early morning
and highest in evening between 6 p.m. and 8 p.m. If
your childs temperature is greater than 38 C or 100 F it
means they have a fever.
A few things to consider when taking your childs
temperature are proper placement of the thermometer,
in the ear, under the tongue or armpit. Also take into
consideration if your child is overdressed or underdressed, if they are laying on the ear being tested, or
if they just ate a popsicle or hot bowl of soup. These
things will alter your reading.
64
FAHRENHEIT
104.0
103.1
102.2
101.3
100.4
98.6
96.8
95.0
CELSIUS
40
39.5
39
38.5
38
37 Normal
36
35
TIP: For small children, taking temperature in

armpit is usually the easiest and most accurate.
The Compass

A few common conditions that can give parents or caregivers grief include constipation, nausea or vomiting and
pain management. Its always important to see your doctors so they can reassure you that the issues are, in fact,
non-threatening, and not something more significant that might require medical intervention or hospitalization.
Its OK to err on the side of caution. Chances are you will end up in emergency at 2 a.m. to find the problem is
something simple like constipation, which can be a normal kid issue. The truth is that your child has had brain or
spine surgery and you have an extra reason to be cautious!
CONSTIPATION
Constipation can be a big issue for children post-operation

as they are moving around less, on medications and might
be afraid to use the washroom because of pain.
Here are a few ideas:
Have your child drink plenty of fluids.
Encourage your child to walk around, as long as it is
OK with their doctor.
Place a warm blanket on your childs abdomen.
Encourage your child to be patient when sitting on
the potty.
Serve high-fibre foods such as prunes, fruits such as
raspberries, apples and pears with skin, vegetables
such as carrots, whole grains such as whole grain
pasta, bread, rice, beans, peas, nuts and seeds.
Talk to the doctor about a bowel routine for your
child; they may order a stool softener or bowel
stimulant.
These are some common medications that may be
ordered by your physician or suggested by a pharmacist:
Lactulose
Restoralax (Peg)
Colace
Senekot
Suppositories
Fleet enema
NAUSEA AND VOMITING
Having nausea and vomiting is miserable. Talk to your

doctor or pharmacist regarding medications that are
suitable for your child. A few other ideas are:
Encourage plenty of clear fluids (water, juice, ginger
ale) to help prevent dehydration, but minimize milk
products.
Avoid spicy foods and serve a bland diet such as
toast, soup and crackers.
Serve small portions.
Have the child take a relaxing warm bath.
Make sure the room is well ventilated consider a fan.
The Compass
BOWEL BUDDY-GET UP AND GO COOKIE

A parent submitted this recipe. These cookies are a hit with
our kids, and they are good for the bowels.
cup margarine or butter
cup prune puree (use canned baby food)
1 cup brown sugar
1 egg
1 cup unsweetened applesauce
2 cups all bran cereal
1 cups flour
tsp baking soda
1 tsp cinnamon or 1/3 tsp nutmeg
Optional: cup to 1 cup raisins or chocolate chips
Directions: In a large bowl, cream margarine with sugar.
Add egg, pureed prunes and applesauce. Mix well.
Add dry ingredients. Mix well. Drop by spoonfuls onto
three cookie sheets (12 cookies per sheet).
Bake for 15 minutes at 350 degrees.
Cool on pan for a few minutes, then remove.
Store in a covered container. These cookies freeze well.
Limit to two per day.
Bring an extra set of clothing for both you and your

child, if you need to leave the house.
Bring a bucket, plastic bag or Ziploc bag, along with
a towel, in case your child needs to vomit.
Keep your childs head elevated with pillows, as
lying flat might make it worse.
Watch for signs of dehydration when your child has
a decreased amount of urine, such as a dry mouth
and eyes, sunken eyes, dizziness, and/or headaches.
Visit a doctor if you notice signs of dehydration.
65
Common Post-Operative Problems
PAIN
There is nothing worse than seeing your child in pain

or discomfort. Pain management is also a top priority
for the neurosurgery team. They dont want to see their
little patients in pain.
Follow all prescriptions and doctors orders for
administering pain medications.
For medications that are given as needed for pain,
keep track of the times it is administered so you know
exactly when you can give the next dose.
Give your child a warm bath for comfort, if allowed.
If not, use a warm blanket. Offer a massage, and provide
a soothing and calm environment. Encourage rest and
relaxation.
As a diversion technique, try a simple craft, story, a

movie or try colouring.
If the pain is not getting better with the medications,
seek medical attention.
GOOD TO KNOW:
Tylenol / acetaminophen / Tempra
are the same
Advil / Motrin / ibuprofen
are the same
TAKING MEDICATIONS
Some children have a very difficult time taking

medication especially in pill form. Here are a few
Edmonton pharmacies that compound medications,
meaning they will turn medications into liquids and
flavour them for your child. Call before going to ensure
they can compound your childs specific medication or
ask your local pharmacy if they will do it.
Dispensaries Ltd.
2925 66 Street NW, Edmonton, AB, T6K 4C1
(780) 461-3021
This location will also transfer medications made on
site to another Dispensaries Ltd. for you to pick up
at no extra charge.
Rexall Outpatient Pharmacy
U of A/Stollery Hospital Pharmacy
8440 112 Street NW, Edmonton, AB T6G 2B7
(780) 407-6990
LeMarchand Dispensary
3B, 11503 100 Avenue, Edmonton, AB
(780) 482-3222
Market Drugs
10203 97 Street, Edmonton, AB
(780) 422-1397
Terra Losa Shoppers
17220 96 Avenue, Edmonton, AB
(780) 443-5800
66
HELPFUL HINTS
Have a good understanding of your childs medical condition and

history. Emergency departments do not keep records of your
childs condition. Consider creating a medical profile.
Get organized. You will have a lot of followup appointments
and more tests. Get a calendar that you can have on you at all
times and pre-book your childrens appointments.
If you notice something you are concerned about, get it
checked out. Many clinics have a doctor on call on weekends or
after hours. The contact information is usually available on the
recorded message at your pediatrician office.
Health Link Alberta is available 24 hours per day and offers
health advice. Your child must be with you during call.
Toll-free: 1 (866) 408-5465
Edmonton: (780) 408-5465
Remember that your child will also have the normal issues, like
teething, constipation and colds. Try to keep these things in the
back of your mind as you assess your childs condition.
It is never wrong to be worried and to seek medical attention.
The Compass
Common Post-Operative Problems
PREPARING FOR NEUROSURGERY OUTPATIENT CLINIC VISIT

Always bring your childs Alberta Health Care card
or the health care card from your province.
Bring any medical results that have been given
to you since your last visit (especially if you are
coming from out of town or another province).
Have a list of medications and dosage, including
herbal and natural supplements and/or vitamins.
Bring all legal documents.
- Legal guardians will need to bring paperwork
- A parent without legal custody will need to bring
paperwork to show that you can make medical
decisions
- Foster parents will need to bring legal documents
that provide information about your casework or
social worker
Arrange for sibling care as this allows you to
concentrate on the childs appointment, for it may
take up to three hours. Your child may get a scan
or x-ray.
A
ttend the appointment prepared with questions,
comments and concerns (make a list between visits
so you dont forget).
A
dvise the medical professional about your
cultural beliefs, if it is necessary.
I t is always possible to have the Stollery Childrens
Hospital arrange for an interpreter that best suits
your family. Please give them advance warning
should you require this benefit.
I f your child has a new rash, fever or has been
exposed to chicken pox in the last three weeks,
or if someone in your family has been recently
diagnosed with tuberculosis, call the office as soon
as possible to reschedule the appointment.
M
ake arrangements for housing and
transportation, if required.
Notes
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67
SECTION 2.5 REHABILITATION
Pete Ryan
After surgery, some children will not go directly home some will head to the Glenrose Rehabilitation Hospital.
The next few pages will outline some of the services and programs offered by the Glenrose, as well as a list of
orthotists available in Edmonton, if your child should require their service.
Glenrose Rehabilitation Hospital

The Glenrose Rehabilitation Hospital offers a variety of
programs that may be useful for your childs recovery.
Your childs physician can make referrals if they think
your child will benefit from the programming that the
Glenrose offers. A few of the programs available for
children are listed.
1-2-3 Go!:
1-2-3 Go! is a group experience offered to children
under three years of age who have complex needs
due to neuromotor, neurodevelopmental or
neurobehavioural problems. The multidisciplinary
team provides intervention and treatment.
Feeding and Swallowing Services:
This team helps children with feeding and swallowing
impairments, providing counselling, education,
treatment and follow-up. (780) 735-6066
Neonatal and Infant Follow-Up Clinic:
Health professionals will follow the progress
of children from the newborn period up to
3.5 years of age and monitor their development
and health progress. (780) 735-7971
Pediatric Brain Injury Rehabilitation Program:
This team provides rehabilitation for children
with an acquired brain injury. Additionally, they
provide assessment and intervention for children
and teens.
Physical Medicine Clinic:
This area deals with children up to 18 years of age who
are experiencing difficulty with movement due to a
68
disorder of the developing brain (e.g. cerebral palsy).

P
LAI- Preschool Learning and Intervention:
This program provides short-term diagnostic
treatment to preschoolers who have learning and
behavioural needs. A multi-disciplinary team uses a
family centred approach in its treatment groups.
(780) 735-7971
P
rosthetics, Orthotics and Seating Clinics:
This clinic offers a wide variety of custom and
commercial orthotic bracing and artificial limbs.
A variety of bracings are done for conditions such as
scoliosis and helmets for cranial remodeling.
U
nit 201:
Glenrose also has an in-patient department that
houses 10 in-patient beds and eight day-patient beds.
This unit is a part of the rehabilitation department
and most commonly admits children after orthopedic
surgery, trauma, brain injury or burns.
TIP: Family 2 Family is a parent support group offered
by the Glenrose. You can call them at (780) 735-7989.
For a complete listing of programs visit
albertahealthservices.ca and enter
Glenrose Rehabilitation Hospital in search bar.
Reference: albertahealthservices.ca/services.
asp?pid=service&rid=7240
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Rehabilitation
Custom orthotics, ankle-foot

orthotics and bracing
If your child requires custom orthotics or bracing,
these are a few places in addition to the Glenrose that
can assist you.
Karl Hager Limb & Brace
10733 - 124 Street
(780) 452-5771
Advanced Orthopedic Systems Inc.
14210 Stony Plain Road
(780) 452-3321
Orthotic Solutions Ltd.
7904 - 104 Street
(780) 496-9312
Northern Alberta Prosthetics & Orthotic
11024 - 127 Street
(780) 452-9513
O
rthotic Consultants
11838 - 111 Avenue
(780) 447-2267
O
rthotic Design & Manufacture
101, 10106 - 111 Avenue
(780) 479-3275
Bouma Orthotic Clinics Incorp.
141, 65 Chippewa Road, Sherwood Park
(780) 417-7008
Notes
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69
SECTION 2.6 PROFILES

The next two pages will give you an idea of how to create a medical profile for your child and where to get medic alert
jewelry. Having accurate information makes caring for your child easier for the health professionals. As well, it makes your
life easier if it is a late-night emergency room visit with a crying and sick little one. Print an extra copy for the triage nurse
to keep. Blank downloadable versions of this sheet will be available on our website at neurosurgerykids.com.
Medical profile
EMERGENCY CONTACT AND CURRENT MEDICATION INFORMATION
PATIENT INFORMATION:
Name:
Date of Birth:
Personal Health Care Number:

Home Address:
Mailing Address:
Home Telephone:
Cell:
PHYSICIAN(S):
TELEPHONE:
SPECIALTY:
LOCATION:
HOME TELEPHONE:
CELL:
WORK TELEPHONE:
EMERGENCY CONTACTS:
NAME:
70
RELATIONSHIP:
The Compass
Medical Profile
MEDICAL CONDITIONS:
ALLERGIES TO MEDICATIONS:
CURRENT MEDICATION REGIMEN
MEDICATION:
DOSAGE:
FREQUENCY:
CONDITION / SPECIAL NOTES:
DOCTOR:
REASON:
DATE:
RESULTS:
RECENT SURGICAL/MEDICAL HISTORY

ER/OR/ADMISSION:
DATE:
MOST RECENT IMAGING

IMAGING:
SHUNT PROGRAMMING
SETTING:
DATE:
RESULTS:
TIP: You can add in any additional sections that you require: general overview, equipment, stretching and so on.
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71
Medical Profile
Medical Diary
DATE:
SERVICE/PROCEDURE:
WHO PERFORMED IT?:
HE/SHE TOLD ME THIS:
TIP: Many smart phones have a medical

identification profile that can be accessed
on your password screen.
MEDIC ALERT IDENTIFICATION AND JEWELRY

It is truly amazing how far medical alert jewelry has
come. Boys and girls of all ages can now find bracelets,
necklaces and labels that are fashionable and practical.
Having a piece of jewelry your child likes makes it easier
to expect them to wear it daily. Children dont always
understand the importance of medical alert bracelets.
For a health professional to have the information on
a medical alert bracelet or necklace available in an

emergency situation can literally mean the difference
between life and death.
There are many sites that offer fantastic medical alert
items and can be found on the intranet. A few that we
found are:
Laurens Hope
laurenshope.com
Lovable Labels
lovablelabels.ca
72
The Compass
Medical Profile
Med ID.com and Sticky Jewelry

medids.com andstickyj.com
HOPE STONES
The Hope Stones program is available to medical children

who have had brain/spine surgery, injury or conditions.
Each tiny colored bead represents a single medical
event such as a needle poke, a surgery, or an x-ray. Each
bead also represents the strength, hope, tears, trials and
tribulations our children and families overcome.
The Canadian MedicAlert Foundation

The Canadian MedicAlert Foundation is a charitable
organization that offers a No Child Without program
to children in participating schools. Children from age
four to 14 receive the MedicAlert membership for free.
Visit nochildwithout.ca for information on enrolling.
To participate in this program, keep track of your childs

medical events on the next sheet. Then go to
neurosurgerykids.com where you can submit
your request for beads. Bead orders are completed
once a month.
HOPE: The feeling that what is wanted can be had,

or that the event will turn out for the best.
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73
Medical Profile
HOPE STONES TRACKING SHEET
Dates from: ______________________ to: __________________________

DATE:
MEDICAL EVENT:
Admission to hospital
Attend camp
Brain or spine surgery
Biopsy
Catheter, drains, tubes in or out
Central line or PICC line
Clinic visit (doctors appointments)
Dental
Discharge
Dressing change
ER visit
EVD - External ventricular drain
Glenrose hospital
Intubation and extubation (breathing tube put in and removed)
Isolation
IV start and stop
Major milestones
MRI, CT scan or ultrasound
NPO (nothing by mouth)
Needle pokes & bloodwork
Other tests and scans
Orthotics - foot/hand/brace/helmets/leg
Oxygen, bipap, cpap
Other surgery
Physio and occupational therapy
PICU or NICU admission
Procedure beads
Satellite visit
School
Shunt infection
Shunt or reservoir tap
Suture or staple removal
TPN (intravenous nutrition)
Transfusion
Transport of any kind
Wound infection
X-ray
Downloadable copy available at neurosurgerykids.com

74
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Notes
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75
Notes
76
The Compass
CHAPTER 3:
Education and Assistance
Illustration by CHRISTIANE BEAUREGARD
Chapter 3: Education and Assistance

79

SECTION 3.1: SCHOOL

Early education
School-age children
Inclusion
89

SECTION 3.2: FINANCIAL ASSISTANCE

Government programs
Savings plans
CHAPTER 3:
Education and Assistance

SECTION 3.1 SCHOOL
Christiane Beauregard
School is a fundamental part of any childs

life. This section will provide information on
some of the programs available for your childs
education, tips for communicating with their
teachers and creating a school profile.
Early education
Programming for children with special needs will typically start before elementary school.
A few programs in the Edmonton area that are often initiated at an early age include:
PROGRAM UNIT FUNDING (PUF)
Alberta Education provides Program Unit Funding

(PUF) to children with severe developmental
disabilities to support early childhood programs
and kindergarten transitioning. Discuss with your
early intervention worker about PUF programs
available in your community. A few of these
programs are:
Getting Ready for Inclusion Today (GRIT):
In the GRIT program, each child will have a
developmental specialist work with them in their
home or community. The multidisciplinary team
The Compass
and family are actively involved to help the child

reach their full potential.
E
dmonton Catholic Schools:
ECS has a variety of programs such as 100 Voices
and Pre-school Outreach that are available
at locations all over Edmonton. For more
information, visit ecsd.net/programs/early_learning/
pre_kindergarten.html or speak to an early learning
consultant at (780) 638-6810.
Robin Hood Association:
Robin Hood Association provides a variety of
79
Early Education
MY THREE-YEAR-OLD BOSS
by Jen Litzenberger
As a developmental specialist, I spend my days with amazing
children either doing home programming, providing support at
playschool or out in the community. Along with my team and the
family, we set goals for the children, and my job is to incorporate
learning into their play experiences. That said, basically, I am
the student...and a three-year-old is my teacher! Each day my
teacher gives me lessons on motivation, appreciation and
dedication. Those are qualities I think we all need to learn about.
We adults lose our ability to get back to the basics; kids learn most
of what they know through play. What a fantastic way to learn.
Imagine going to work every day and building a castle of
blocks, playing with a train set or going for a walk to the park.
Thats a childs occupation, and I am so thankful I get to be a
part of that. There are many challenges, but the rewards are
endless. I get the chance to celebrate all victories big and small,
whether it is a new word spoken, one more step or even a few
seconds of eye contact. Kids are amazing little people that have
the ability to accept that every one of us is unique. Through
their curious nature, they can learn about all of our differences.
I am honoured to have been welcomed into the homes of these
families and that they have allowed me the opportunity to spend
time with their wonderful children.
services for the families of children with special

needs. It has an early intervention program that is
available for children up to three and a half years
old to assist parents with accessing resources in
their community.
The association also has an early childhood
program for parents of children six years and
younger that offers a wide variety of services such as
education, support, child development information
and play groups. Learn more at robinhoodassoc.com.
Elves Special Needs Society:
This programming is offered to children with severe
delays. Visit elves-society.com or call (780) 454-5310
for more information.
Transitions:
Transitions is a not-for-profit that provides
support services to the families of people with
developmental delays and disabilities in St. Albert,
Sturgeon County and northwest Edmonton.
It offers services from early intervention to
community living for people over 18 years old. Visit
transitions-ab.org or call (780) 458-7371.
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The Compass
School-age children
The school system encourages children to attend school in the neighbourhood in which they live because it encourages
peer relationships in their community. There are many different programs available that can be beneficial for your
child, so it is important for parents to do their research before enrolment. There are a number of programming options
available in both the Edmonton Public and Catholic School system. The following are examples from the Edmonton
Public School Quick Guide. (Edmonton Catholic Schools also has integrated programming please visit the website at
ecsd.net for more information.)
PROGRAMMING
Regular program:
Regular programming is offered in most schools but
can be delivered differently depending on the school.
Alberta education has a mandatory curriculum at all
schools.
Alternative program:
Some schools have a focus on a specific type of arts,
athletics, language, faith or cultural philosophy while
meeting the mandatory curriculum.
Special education program:
Special education services are available at some
schools. These programs will offer specialized
services and support to children with special needs.
- Behaviour and learning assistance helps students
with chronic, extreme pervasive anti-social
behaviours achieve academically
- Challenge programming is for students with
high-ability learning who have special needs
- Community-learning skills/behaviour-learning
assistance focuses on students with moderate
cognitive disabilities and significant developmental
delays
Some of the resources available through the schools

division are physical and occupational therapy, speech
pathology, social work and psychiatry. These consultants
can provide tools and exercises that will help your child
and family.
Not all programming is available at all schools, so
it is important for parents to do their research before
enrolment. Visit the schools website, Facebook page or
attend an open house. Many schools have open houses
from February to April.
It is important to meet with the team (teacher, aide,
principal, OT, PT, SLP and special ed coordinator)
throughout the year to discuss programming progress.
Working together as a team, you can create achievable
goals. It is important to be realistic with your goals for
your child but also to challenge them to be the best they
can be.
Educators are on our childs side; they want them to
succeed and they care about their accomplishments.
Keep that in mind. Working together efficiently and
respectfully will not only help your child it will make
the school experience better for everyone.
GOOD TO KNOW:
Some therapists who might work with your child are
occupational therapists (OTs)
physical therapists (PTs)
speech-language pathologists (SLPs)
Reference:
patheights.epsb.ca/publications/index.shtml
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81

School can be a stressful time for parents, especially if their child requires additional support and assistance.
Mary Bowers, a multiple exceptional program teacher,
has many top-notch tips for helping parents effectively
communicate with teachers. Heres what she had to say:
As a parent, it is important for you to read the IPP, make

changes if necessary and ask questions.
Some useful questions to ask are:
W
hat teaching strategies can the teacher use to
help my child fulfill the learning goals?
W
hat support staff are available to help my child
reach the goals?
W
hat can I do at home to help my child reach the
outlined goals?
W
hat accommodations are in place for my child to
help him or her reach the outlined goals?
S
tart early. It is important to set up a meeting with
the teacher, principal and special needs aide at the
school in June the year before to introduce your
child and open up lines of communication about
your childs needs. It gives the teacher an ample
amount of preparation time to think about ways of
meeting and integrating your childs needs.
B
e short and sweet. Teachers receive many notes
each day from parents. Since teachers want to
focus their time on the students, it is important for
parents to keep their notes short and to the point.
If you have a very sensitive or confidential matter
to discuss, consider setting up an appointment or
sending a note in the agenda book for the teacher to
call you directly.
B
e patient, but be persistent. If you do not
receive a reply immediately, wait a few days and
send a follow-up note. Chances are, the moment
the teacher sat down to reply to you something
happened in the class that needed his or her
attention.
M
ake an appointment. Teachers have a set teaching
plan each day and only a limited amount of time in
which to implement it. When a teacher is pulled out
of class to speak with a parent, it directly impacts
student learning that is, your childs learning.
ake another appointment. If the teacher is truly
M
not listening or responding, then consider setting
up an appointment with the principal.
J ust ask. Communication is especially important
at the beginning of the year. Many school boards
discourage emails or text messages. Agenda
messages, leaving a message with the secretary or
appointments are other options.
The creation of an individualized program plan (IPP) for

children with special needs is a very important step in
the schooling process. Information that teachers collect
includes:
Previous assessments
Report card grades and comments
Information gained from observation
Selected work sample
Information provided by the parent
Information by other professionals
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Inclusion
Having your child involved and included in the school community is a top priority for many parents.
Jessica Bosma is a teacher and parent of a medical
child with insight into addressing inclusion in the
school system. Here is her wisdom:
I am a teacher, but more importantly, I am a mother.
Within the last year, I became the mother of a child
with special needs. Throughout my career, Ive worked
with many different children with a wide range of
needs, and have always held a special place in my heart
for these children and their families. As a bystander
to their struggles in the education system, Ive always
admired the strength of these families. Until I had a
special needs child of my own, I had never experienced
the pain that cuts so deep into your heart when you feel
you are helpless to your child. Much of the journey of
a special needs child is put into the hands of others. I
strongly believe that the one place where this journey
can be heavily influenced by the parents with a deep
vested interest and strong collaboration is within the
education system.
On February 28, 2012, my then-15-month-old son
Oliver was diagnosed with type one diabetes. I cried
with fear for the future and the great unknown.
I immediately asked myself, Would my son still have the
same opportunities as the other kids? Would he be seen
as different? What would his quality of life be like?
The teacher in me worried. Would he be included? And
what does inclusion mean for him once he enters the
school system?
I strongly believe that one place where

this journey can be influenced by the
parents with a deep vested interest
and strong collaboration is within the
education system.
A short six months later on August 12, 2013, at 21
months old, he was diagnosed with a brain tumour.
Now I was plagued with even stronger concerns about
his future. What if he never walks again? What if he
needs a feeding tube? What if he cant breathe on his
own? What if he is severely delayed developmentally?
Would he fit in with his peers? Will he be included in a
regular classroom? Will his school system support him?
Will they support our wishes for him? Will he receive
all the support he needs? These thoughts consumed my
mind. Even though my young son was not yet of school
age, I wondered the same things about the daycare he
would attend once I returned to work. For the first time
The Compass
ever, I stood in the shoes of all my past special needs

parents, and suddenly the topic of inclusion became
clear to me in a whole new light. I know myself as a
teacher, and I know that personally I would bend over
backwards for any one of my students.
I also know that there are some teachers who
wouldnt do the same. So what if my son has one of
those teachers?
Below, I briefly discuss the nine areas that I believe
are very important when working on the inclusion of
your child in the school system. Of course, nothing is
written in stone and this is only my opinion as a teacher
and a parent of a special needs child.
ollaborate
C
Get involved, and know everyone who will be
working with your child. Collaboration is key. You
do not have to like everyone in order to collaborate.
Make phone calls, write emails and make yourself
as visible at school and in the classroom as possible.
Offer to help when it is needed and keep in contact
with your childs teacher and school employees
that will be involved with your child.
E
ducate
The scariest thing as a teacher is when a child
comes into your class with medical or special needs
and you have no knowledge on how you can best
support them. Teachers often code special needs
children as part of the process of getting support
for them. Codes are broad and they do not define
the child. A code does not help me as a teacher
plan for that child, as every child is so different.
Set up meetings with teachers ahead of time, ask
to speak at a staff meeting if youd like to educate
the whole staff, meet with teachers and principals
consistently and provide support material like
books, pamphlets, websites anything that will
help educate us on your childs needs. The more we
know as teachers, the more we can learn, and the
better we can support your child.
ave a vision
H
Know what you want for your child. Create a vision
and make a plan, long term and short term. Write
it down, document it and keep record of everything
that is important to you. Celebrate when your child
achieves goals. Most importantly, share your vision
with your childs teacher so they can work together
with you to achieve it.
eek routines and consistency
S
Routine and consistency in school is key to making
children feel comfortable and secure. They can help
83
Inclusion
children work on their goals, and if you can advocate

for your child to have supports in school, they can
work towards a developmental goal. It is important
to continue to work on this at home. There is
nothing more frustrating as a teacher then having a
child with consistent setbacks because they are not
continuing the work at home. It takes a village to
raise a child keep it consistent.
U
se inclusive language
Inclusive language is delicate, but it is very
important. The way that you speak to your child
and about your child is the way their teacher and
classmates will speak to and about them. Speak to
your child the way you would speak to any other
child your child is not defined by their differences.
Choosing the wrong words can hurt your child
and make them feel like an outsider. Inclusive
language strives to promote all people, regardless of
difference, as full and valued members of society by
selecting vocabulary that avoids exclusion or makes
one feel less valued than others. If you hear your
childs teacher using language that is not inclusive
or sets your child out as different, point it out.
Remember that teachers are often multitasking,
working with many different children, sometimes
we unintentionally slip up and we wont be hurt if
you remind us of important things like this.
Advocate
No one will advocate for your child the way you
will. Teachers and principals will help they know
the paperwork and they know the ropes, but you
know your child. If you want an assistant for your
child, fight for it; if you believe your child needs
extra supports or services, fight for them. Decide
what you want for your child and be their advocate.
The school system can be very difficult and tiring,
but let the teachers know what you want and what
youre trying to achieve and dont give up until
you get it. Still, be reasonable in your requests. It
is always attainable; its just a matter of advocating
for what you want.
ont be afraid
D
The school system can be scary, especially if
your child is just entering kindergarten. You will
probably be full of questions and concerns, but
dont be afraid. Teachers are there because they are
invested in your child. We genuinely want to help
and we want to make your child feel included and
have the very best possible experience. Dont be
afraid to let go of some control and let the experts
84
at the school help, and dont be afraid to let us into

your world. Understanding your daily struggles and
your concerns will help us create a better plan for
your child.
Make your child an equal
If you expect others to treat your child as an
equal, then you need to do the same. As a parent,
I know I would never intentionally single my
child out or be overbearing, but I also know that it
can happen without realizing it. Dont intervene
unless it is needed; let your child interact with
their peers and allow them to take some falls and
to feel disappointment. Let them celebrate success
without their parents holding their hands. This
is important for all children, especially yours. It
is critical for emotional and social development
and it is something that all children experience.
When they do something great, let their classmates
celebrate with them and allow your child to do
age-appropriate activities within their classroom.
If this means letting go and watching from outside
the window, thats OK! By doing this, you are
putting your child on a level playing field with their
classmates. They are equal, regardless of what their
medical condition is.
Use the supports you are given
If your child is given an assistant, offer to work
with them and teach them about your child. Meet
with OTs, speech therapists, physiotherapists,
counsellors, teachers, principals and inclusion
consultants. Take all the support you can get and use
it to the best of your childs advantage. Remember
they are there for your child, let them know what
you think is working well and where you think
it could be better or different. Your child is going
to spend 13 years in school and even more if they
continue on to higher education. School should not
be something that is feared you should love your
childs school and your child should love school.
I hope that I have captured some key points to help you
as a parent or guardian feel better about entering your
child into the school system.
My experience with Oliver has changed my opinion on
inclusion and the ways in which parents and teachers can
work together to provide the best experience possible. Of
course, everyone will have a different experience, but as a
parent, if you dive in head first with a clear vision of what
you would like for your child, you will experience success
and your child will be happy they will love school.
The Compass

Advocating for your child in the community and school
system can be an overwhelming task. The following
agencies focus on family advocacy and support:
The Edmonton Coalition
This is a group of eight organizations dedicated to
the inclusion of children with special needs and the
support of their families.
Alberta Association for Community Living
This is a non-profit group that represents the
interests of children and adults with disabilities.
They advocate for issues from inclusive education to
community living.
PARENT-PROVIDED TRANSPORTATION
In some cases, parents of students with special
education needs may receive a subsidy for parentprovided transportation when a reasonable level of
APPLYING FOR A SUBSIDY
If Student Transportation determines that a reasonable

level of yellow bus service cant be provided, you can
apply for a subsidy by completing the parent-provided
agreement form.
AACL provides free consultation services to

teachers in modifying and adapting curriculum.
They have a large variety of resource material and
offer in-services and workshops. Visit aacl.org or call
(780) 451-3055.
G
ateway Association for Community Living
This association provides support and education for
individuals and families regarding public awareness,
training and advocating services. Learn more at
gatewayacl.org or call (780) 454-0701.
yellow bus service cant be provided. Only one subsidy

will be provided for parents transporting more than one
child to the same school.
For more information about the parent-provided

transportation subsidy, contact Student Transportation
or your childs school office.
Notes
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85
There are a variety of ways parents can share information about their childs medical
ailments, their vision and goals. The next few pages will offer you examples of ways to
present information to your school community. This profile could be used for school,
daycare, caregiver, friends or families.
PROFILE: JOHNNY B GOODE

Nickname: Jon
Age: 5
Section 1 - Peronal information

Personal information such as name,
nickname, birthdate.
Section 2 - About me
A
bit of information about your childs strengths,
interests and social involvement. Putting a few
pictures of your children doing something they
love is a great addition to this document. You can
choose to do point form or paragraphs.
Section 3 - Challenges
Information about things that may be challenging
for your child either emotionally or physically.
Things to avoid would go in this section.
86
ABOUT ME
I am a fun and happy three-year-old boy
I love my Mom and Dad, and I absolutely
adore my brother
Playing with trains is my favourite thing to do
I love watching the Magic School Bus and
Leap Frog videos
THINGS I DONT LIKE

When I am left out, I feel sad
The feeling of sand
Spinning around in circles
Loud noises
When people doubt my ability
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Section 4 - My diagnosis
Use this section to offer some information about
your childs diagnosis, keeping in mind any
information to help the teachers or other caregivers
understand the condition. You can create another
section for medications, medication side effects,
allergies and previous surgeries.
MY DIAGNOSIS IS CEREBRAL PALSY

Cerebral palsy is a term used to describe a group of
chronic conditions affecting body movements and muscle
coordination. It is caused by damage to one or more
specific areas of the brain.
Cerebral palsy is neither progressive nor communicable.
It is also not curable in the accepted sense, although
education, therapy and applied technology can help
persons with cerebral palsy lead productive lives.
MY MEDICATIONS
The medication that I take is for my tight muscles. It is
called _____________ and it can make me sleepy during
the day. I also need to avoid eating certain foods like
_____________ because it doesnt react well with my
medication.
Section 5 - My equipment
This section gives information on any assistive
equipment or devices that your child may require.
Including a picture is helpful. Include: braces/
orthotics, mobility devices like walkers/canes/
wheelchairs, communication devices, oxygen or
breathing, etc.
Section 6 - Warning signs
If your child has a condition that would require
close monitoring for warning signs you might
want to create a section here for that. The more
information we provide to our teachers and
caregivers the better they will be at identifying
warning signs.
MY EQUIPMENT
The equipment I need to use daily is my cochlear implant.
It has been surgically implanted because I have a hard
time hearing you. Sitting close to me will also help me
hear you better.
WARNING SIGNS
I have a shunt, it helps drain fluid from my brain.
If my shunt becomes infected or obstructed I can get very
sick. Please watch for these symptoms to keep me safe:
Bulging at the valve site
Frequent and increasing severity of headache
Numbness or change in sensation to one side of the
body
Balance is off
This is just a sample, list is not complete
Review the information with your childs doctor to confirm
accuracy and include additional handouts.
Section 7 - Additional information

Include anything else your teacher should know
about your child. Include anything you think will
help your child find more success in their program.
Include a favourite quote or picture.
HELP ME BE SUCCESSFUL BY...

Speaking slowly and using short sentences
When my hand shakes when colouring, put your hand on mine
Be patient. I am trying really hard
Give me time to reply. Sometimes it takes me a few minutes
to get the message from my brain to my mouth
Involve me in everything
I AM A NEUROSURGERY HERO!
The Compass
87
LETTER TO PARENTS
Writing a letter to other parents of kids in your childs

class helps provide information, break the ice and
Hello,
We are the Jones family and we would like to introduce you to our
son Preston! This year Preston will be attending kindergarten with
your child and we are very excited! Since our kids are going to be
spending the school year together we thought it would be a good
idea to share a bit of information about Preston with you.
When Preston was one month old, he was very sick with an
infection in his brain called meningitis. He spent a few months in
the hospital, fighting to get better and thankfully he did! Preston
now requires a wheelchair to help him get around because his
leg muscles are tight. He loves when his friends push him around
slowly. Our little boy is very smart and social. He has a very good
demystify your childs condition. Keep it short and to

the point. For example:
understanding of what is going on and loves being included in
everything. Over the last year, Prestons vocabulary has exploded
from hundreds to thousands. Sometimes, it takes a bit of work
for him to put his thoughts into words but we know that his new
amazing friends will take the time to listen.
We look forward to having a fun and successful year together.
If you have any questions please feel free to ask we love talking
about our son.
Sincerely,
Tim, Lillianna and Preston Jones
Notes
88
The Compass
SECTION 3.2 FINANCIAL ASSISTANCE

GOVERNMENT FUNDING AND RESOURCES AND GOVERNMENT SAVING PLANS
Whether it is a therapy that is not covered, a modification to your house or a specialized piece of equipment,
it all costs money. We have compiled a few organizations that can offer assistance. If your health care
provider is making a recommendation, they are often willing to help with the quotes and referrals.
Let them help with the paperwork; it is one less thing you have to worry about.
Government programs
ALBERTA CHILD HEALTH BENEFIT
The Alberta Child Health Benefit plan pays for health

services that are not available through standard Alberta
Health Care insurance, such as eyeglasses, prescription
drugs and dental claims.
This health plan is for children up to age 18, but
PROGRAMS ALBERTA
This website offers a wide variety of information on

raising children, from newborns to six-year-olds, with
medical or special needs. It has information on issues
ALBERTA AIDS TO DAILY LIVING (AADL)

Albertans with a long-term disability, chronic or
terminal illness can receive financial assistance by
AADL to buy medical equipment and supplies. This
service will help with things like walkers, diapers,
specialized bracing, specialized seating, catheters,
DISABILITY TAX CREDIT
Take a moment to do the eligibility survey to see if

you or your child is eligible. Many eligible people dont
apply!
The disability amount is a non-refundable tax credit
that a person with a severe and prolonged impairment
DISABILITY PARKING PLACARD
Your pediatrician or physical therapist can do this

paperwork for you. To be eligible you or your child must
be unable to walk more than 50 metres (150 feet). Shortterm, long-term and permanent disability placards are
available. Fill out the paperwork in your childs name even
though you are the driver. The registry service also needs
The Compass
additionally up to age 20 if they live at home and are

attending high school up to grade 12.
There are no fees to sign up. Income is a factor
for eligibility. Call (780) 427-6848 or toll free
1-877-469-5437, or visit employment.alberta.ca.
such as finances, childcare, learning, schooling, daily

care and behaviour. Lean more at programs.alberta.ca.
wound and ostomy supplies and much more.

Families are responsible to pay a portion of the cost,
but there is a yearly out-of-pocket maximum. Make
sure you take note of when the year cycle starts, as it is
usually not January to January.
in physical or mental functions can claim to reduce the

amount of income tax.
You and your practitioner will need to fill out FORM
T2201, DISABILITY TAX CREDIT CERTIFICATE.
Call 1-800-387-1193, or visit cra-arc.gc.ca.
a copy of the childs birth certificate. Placard holders also

have the option for license plates with a disability logo.
Go to servicealberta.ca to learn more.
Vehicles displaying the provincially issued disabled
placard are permitted to park at City of Edmonton
parking meters.
89
Government programs
Disabled placard holders are permitted to park at

on-street parking meters free of charge for the
specified duration of the meter:
15 minutes free parking at 15-minute meters
30 minutes free parking at 30-minute meters
EARLY INTERVENTION PROGRAM
This program offers good help take the time to call if

your child is between birth and three and a half years
old. They will offer you guidance.
Early Intervention provides support and information
to families who have a child with two or more
developmental delays or a diagnosed disability aged
between newborn and three and a half years old. An
early interventionist can come to the home to give
developmental strategies, offer parent support, and help
navigate accessing community agencies and resources.
They offer playgroups, parent groups, and they are a
wealth of knowledge.
Parents should call if they have concerns about their
child regarding attention, movement, feeding, hearing,
behaviour, social interaction or overall development.
Please visit the following links for more details about
this service at various locations.
Two hours free parking at two-hour meters

Five hours free parking at five-hour meters
Get all the details by calling 311 or visiting
edmonton.ca/transportation/driving_carpooling/parkingmeter-rates.aspx.
Alberta School for the Deaf

Connect Society, south entrance
6240 113 St., Edmonton, Alberta T6H 3L2
(780) 454-9581
Children and Youth Centre
- Room 101 - 3 Spruce Avenue, Sherwood Park,
Alberta T8A 2B6 (780) 640-9401
- Dickinsfield Mall - Room 25 - 9228 144 Ave.,
Edmonton, Alberta T5E 6A3 (780) 342-1707
- Spruce Grove Health Unit - Suite 110 - 505 Queen
St., Spruce Grove, Alberta T7X 2V2
(780) 342-1300
- Transitions St. Albert - 365 Carleton Drive, St.
Albert, Alberta T8N 7L1
(780) 458-7371
EMPLOYMENT INSURANCE (EI) SPECIAL BENEFITS

FOR PARENTS OF CRITICALLY ILL CHILDREN
If you are absent from work to care for a critically

injured or ill child and you meet the criteria below, you
might be entitled to receive EI special benefit (PCIC).
To be eligible for the PCIC benefit, your regular
weekly earnings from work have decreased by more
than 40 per cent because you need to provide care or
support to your critically ill or injured child; you have
accumulated 600 insured hours of work in the 52 weeks
prior to the start of your claim, or since the start of your
last claim, whichever is shorter (this period is called the

qualifying period); you are the parent of a child who
is critically ill or injured; your child is under 18 years
of age at the time the 52-week window during which
PCIC benefits can be paid opens, based on the date
the specialist or medical doctor states that your child
became critically ill or injured.
Contact servicecanada.gc.ca or your unemployment
office for details.
FAMILY SUPPORT FOR CHILDREN WITH DISABILITIES (FSCD)

FSCD offers support for respite, child care, sibling
care, mileage, clothing allowance, domestic assistance,
and more. If your child has impairment in two areas
(speech, gross motor, fine motor, self care) ask about
specialized services.
Call (780) 427-4354 or visit child.alberta.ca.
Additionally, programs.alberta.ca features helpful
information of FSCD and frequently asked questions.
Look under Persons with Disabilities.
This is a crucial step. Take the time to fill out the

paperwork or have a social worker help you. You need
to have a diagnosis for your child. This program offers
assistance for respite care, shoes, home making, mileage,
parking and other services. Dont let the name deter you
from looking into this they offer support for a large
variety of conditions. They do not give you retroactive
pay, however, so call sooner rather than later.
TIP: Filing out paperwork for Family Support for
Children With Disabilities (FSCD) is a crucial step to
getting the help you need.
90
The Compass
Government programs
HEALTH LINK ALBERTA
This is a 24-hour, seven-day-a-week province-wide

nurse telephone advice and health information service.
Call toll-free at 1-866-408-LINK or call Edmonton
Capital Health Link at (780) 408-LINK.
NON-INSURED HEALTH BENEFITS (NIHB)
This is a national program that provides coverage to

registered First Nations and recognized Inuit families.
Non-Insured Health Benefit Program helps cover the
costs of a limited range of goods and services that arent
If your child is sick and you are calling for

health advice you must be with your child so they
can do an assessment with you over the phone.
Visit myhealthalberta.ca
covered by primary health coverage

To find out more about the NIHB, please contact
First Nations & Inuit Health at (780) 495-2694, or toll
free at 1-800-232-7301.
RESIDENTIAL REHABILITATION ASSISTANCE PROGRAM RRAP FOR PERSONS WITH DISABILITIES

RRAP offers financial assistance to allow homeowners
and landlords pay for modifications to make their
property more accessible to persons with disabilities.
SAVINGS PLANS
Registered disability savings programs

Registered Disability Savings Plan
Canadian Disability Savings Grant
Canadian Disability Savings Bond
A Registered Disability Savings Plan (RDSP) helps
Canadians with disabilities and their families save for the
future. Anyone who is eligible for the disability tax credit
and is under the age of 60 may be eligible for an RDSP.
Call them at 1-800-668-2642 or visit them on the

internet at servicecanada.gc.ca.
How do I apply?
O
btain a social insurance number for your child.
1-800-622-6232
servicecanada.gc.ca
O
pen an RDSP at the major financial institution of
your choice and apply for the grant and the bond.
disabilitysavings.gc.ca
Notes
The Compass
91

CHARITIES
Alberta Orange Foundation for Children

This foundation supports individual children and
registered charitable organizations aiding orphaned,
handicapped and underprivileged children who are 18
years of age or younger in Alberta. Speak to someone
from the foundation by calling (780) 467-1161.
Burns Memorial Fund
Grants are available to improve and sustain the quality
of life for special needs children in low-income families
by providing funds for services and equipment. Learn
more at burnsfund.com/programs/childrens-fund or email
the fund at info@burnsfund.com.
Canadian Cancer Society
The Canadian Cancer Society provides transportation
subsidy assistance for travelling to and from cancer
treatment and follow-up appointments. They also have
compassionate financial assistance programs. Eligibility
is based on meeting certain criteria. Read more at
cancer.ca.
Canadian National Institute for the Blind
CNIB supports individuals who are blind or partially
blind. CNIB provides support for guide dog assistance,
scholarships and bursaries and much more. Visit cnib.ca
for more information.
Cerebral Palsy of Alberta
The Cerebral Palsy Association in Alberta (CPAA) is a
registered non-profit organization that supports people
affected by cerebral palsy and other disabilities in the
Province of Alberta. You must be a member, so sign up
today at cpalberta.com.
Childrens Ability Fund
The Childrens Ability Fund mission is to enhance the
independence of persons with disabilities throughout
northern Alberta. They do this by providing funding for
specialized equipment. Call them at (780) 454-9191 or
visit them on the web at childrensabilityfund.ca.
Childrens Wish
Make-A-Wish Northern Alberta grants wishes to
children living with life-threatening medical conditions.
Their aim is to enrich the human experience with hope,
strength and joy. Contact them at 1-800-267-9474 or
childrenswish.ca.
Dreams Take Flight
This is a national volunteer charitable organization
dedicated to providing the trip of a lifetime to
92
physically, mentally or socially challenged children.

Learn more at dreamstakeflight.ca.
Easter Seals
Regardless of age, disease or disability, Easter Seals help
with accessibility and mobility equipment to enhance
quality of life for Albertans with special needs. Visit
easterseals.ab.ca for more information.
Edmonton Civic Employee Benefit
This organization provides special aid assistance and
scholarships for children. You must be a contributing
member of the organization nine unions and
associations are members. Visit ececaf.ca for more
information.
For the Love of Children Society of Alberta
This organization helps special needs children
and children who are suffering from high-risk, life
threatening illness or trauma in Canada and overseas.
They organize fantasy flights and programs for children
at risk. Visit fortheloveofchildrensociety.org.
Good Neighbour Fund
This is a registered charitable organization that provides
limited financial resources or assistance to individuals in
Edmonton and Northern Alberta. For more information,
visit goodneighbourfund.ca.
Kids Cancer Foundation of Alberta
(formerly Kids Cancer Camps)
KCFA helps children and their families facing childhood
cancer by providing programs and funding in areas,
including camp, for young people and their families
affected by cancer, pediatric oncology research, clinical
support, and by providing education (post-secondary
preparation/post-secondary) bursaries to young adults
who have a history of childhood cancer. Learn more
at kidscancercare.ab.ca and get in touch with them at
staff@kidscancercare.ab.ca.
Presidents Choice Children Charity
PC considers applications from families whose children
have been diagnosed with a range of disabilities,
including cerebral palsy, autism, muscular dystrophy,
spina bifida and other various developmental
disabilities. To qualify, the household annual income
must be $70,000 or less. They provide direct financial
assistance in the purchase of mobility equipment,
wheelchair accessible modifications, and more. Call
them at 1-877-525-4762 or visit presidentschoice.ca.
The Compass
Rainbow Society of Alberta

The Rainbow Society of Alberta is dedicated to fulfilling
wishes for Albertan children between the ages of three
and 18 who have a chronic or life-threatening illness.
Check out rainbowsociety.ab.ca/about/default.asp for
more information.
year-old, live in Canada and be able to formulate their

dream (this must be the dream of the child) and be able
to communicate their dream with or without technical
assistance. No consideration is given to a child who has
received a dream or wish from a similar organization.
Call 1-800-461-7635 ext 224, or visit sunshine.ca.
Shriners Children Hospital

This hospital provides world-class care with a host of
orthopedic and neuromusculoskeletal disorders in a
family-focused environment. Shriners is committed
to helping children improve their quality of life and
achieve as much independence as possible.
Read more at shrinershospitalsforchildren.org/Hospitals/
Locations/Canada.
www.wheelchair.ca
This site lists funding sources for equipment, in
addition to car manufacturers that provide discounts
for alterations to vehicles needed to accommodate
individuals with physical disabilities.
Sunshine Dreams for Kids

This organization grants wishes to kids with severe
disabilities and life-threatening illnesses. To qualify, the
child must be between the age of three and prior to their
18th birthday, have at least the cognitive ability of a three-
ASSOCIATIONS
AACL Alberta Association for Community Living

(780) 451-3055
aacl.org
Arthritis Society Alberta and Northwest
Territories Division
(780) 424-1740 or 1-800-321-1433 ext 1
arthritis.ca
Autism Society
(780) 453-3971
autismedmonton.org
CNIB (Canadian National Institute for the Blind)
(780) 488-4817
cnib.ca
Canadian Paraplegic Association
canparaplegic.org
Connect Society
connectsociety.org
Edmonton Cerebral Palsy Association
edmontoncp.com
Edmonton Cystic Fibrosis Society
ccff.ca
Edmonton Food Bank
edmontonfoodbank.com
Edmonton Epilepsy Association
edmontonepilepsy.org
The Compass
Walter and Wayne Gretzky Foundation for Blind

Youth of Canada
This organization provides academic post-secondary
education scholarships to eligible blind and visually
impaired students. Visit the website at
cnib.ca/en/about/awards/scholarships/wgs for all the
details, or call (519) 459-8665.
E
dmonton Down Syndrome Society
(780) 944-4224
edss.ca
E
dmonton Garrison Family Resource Centre
(780) 973-4011 ext 6300
familyforce.ca
F
amily Centre
the-family-centre.com
Gateway
(780) 454-0701
gatewayassociation.ca
M
uscular Dystrophy Association Canada
(780) 486-1948
muscle.ca
M
ilitary Family Resource Centre
mfrcedmonton.ca
S
pina Bifida and Hydrocephalus Association
(780) 451-6921
sbhana.org
W
ar Amps
1-800-267-4023
waramps.ca
93
Notes
94
The Compass
CHAPTER 4:
Therapy, Fun & Products
Illustration by CAROLINE HAMEL
Chapter 4: Therapy, Fun & Products

97

SECTION 4.1: COMPLEMENTARY THERAPY

Physiotherapy, occupational therapy and speech therapy
Complementary therapy
99

SECTION 4.2: FUN

Funding for sports
Bike program
Special Edmonton summer events
Travel insurance
105

SECTION 4.3: SPECIALIZED PRODUCTS

Mom tips
This and that
Jack-of-all-trades
CHAPTER 4:
Complementary Therapy and Fun

SECTION 4.1 COMPLEMENTARY THERAPY
The purpose of this section is to provide you with information about alternative therapies.
Always seek the advice of your doctor or other health care professionals before undertaking
any of these therapies. It is also important to get approval from your surgeon before initiating
a therapy, as there may be limitations or restrictions that need to be considered. Each therapy
offers something different and may or may not be suitable for your child.
Below is a list of some available therapies. We are unable to list every therapy or facility
available in Edmonton, but the internet is a great resource for finding more. Remember to always
keep your receipts for taxes; your accountant can help you learn what expenses you can claim.
Physiotherapy, occupational therapy

and speech therapy
When your child is in the hospital or at the Glenrose, they will have access to many professionals such as
physiotherapists, occupational therapists and speech-language pathologists. Here are a few options you can find
in the community.
PHYSICAL THERAPY
Summerside Physical Therapy

The pediatric rehab services include physiotherapy
and occupational therapy for a variety of conditions.
From medically fragile infants to teenagers
who feel uncoordinated, they offer neurological
rehabilitation for all ages.
summersidephysio.com
(780) 466-8676
Pediatric occupational therapy
mindfulmovementinc.com
Speech and language
Encouraging First Words is a program offered by
Alberta Health Services and Language Services.
- Hanen is a speech and language program database.
hanen.org
- Qi Creative
qicreative.com
- The Ability Society
abilitysociety.org
The Compass
- Kids First Communication Service Inc.

kidsfirstcrew.edublogs.org
- Khan Communication Solutions
khancommunicationservices.com
- Alberta Speech and Language Association of
Private Practitioners asapp.ca
P
rivate physiotherapy, occupational and speech
Many therapists will do private therapy sessions.
The therapists you meet in hospital or at the
Glenrose can often lead you in the right direction
for private services.
Constraint therapy
Constraint therapy aims to improve the hand and
arm use of children with hemiplegia. It involves
physical constraint of the uninvolved or less affected
arm to increase the use of the more involved
or affected arm. Constraint therapy is done at
the Glenrose Rehabilitation Hospital. For more
information, visit canchild.ca/en/canchildresources/
constrainttherapy.asp.
97
Physiotherapy, Occupational Therapy and Speech Therapy
COMPLEMENTARY THERAPY
Before initiating therapy, consult your physician.

Anat Baniel method
The Anat Baniel method is for children who have
special needs. It is based on the understanding
that many diseases and traumas of childhood
interrupt the normal process of formation of the
brain. Through movement and gentle touch this
method aims to enhance your childs awareness and
create new connections in the brain. Contact the
Edmonton ABM practitioner, Carla, at
abm2011@telus.net, or visit anatbanielmethod.com.
Conductive education
Conductive education is a rehabilitation program
for people of all ages with disabilities such as
cerebral palsy, Parkinsons, multiple sclerosis, or
those who have had a stroke or brain injury.
Google CE for various locations in Canada.
Cuevas Medek exercises

CME is a physical therapy method for infants and
children with motor issues caused by disorders
affecting the central nervous system.
Visit cuevasmedek.com.
Craniosacral therapy
Craniosacral therapy is based on subtle movements
that cause a response in cerebrospinal fluid (CSF)
fluctuations within the spinal cord and brain
environment. More information is available at
cranialtherapy.ca.
Hyperbarics oxygen therapy
For information on this, visit canadianhyperbarics.com.
Masgutova method
Information about the Masgutova
Neurosensorimotor Integration (MNRI) method is
available at masgutovamethod.com.
DENTISTS WHO TREAT CHILDREN WITH SPECIAL NEEDS

Dr. Doug Bosko
General Dentistry
Blue Quill Shopping Centre
366 Saddleback Road
Edmonton, AB
(780) 437-4816
Dr. Richard Caldwell
Pediatric Specialist
1120 Weber Centre
5555 Calgary Trail South
Edmonton, AB
(780) 438-4718
Dr. Mai Diab
201W, 14310 111 Avenue
Coronation Plaza, West Tower
Edmonton, AB
(780) 484-5667
Dr. J. Evancusky
Childrens Dental Centre
210, 11808 St. Albert Trail
Edmonton, AB
(780) 425-5437
D
r. Bohdan Kuzyk
845, First Edmonton Place
10065 Jasper Avenue
Edmonton, AB
(780) 428-7767
D
r. N.D. Preshing, Dr. Jerry Thomas &
Dr. C. Martin-Neumeyer
General Dentistry
University of Alberta Dental
Clinic, WMC-2C18440-112 Street
Edmonton, AB
(780) 407-6854
D
r. Alan Roth
440, 4445 Calgary Trail South
Edmonton, AB
(780) 435 -2098
D
r. Salina Tromposch
General Dentistry
330-664 Wye Road
Sherwood Park, AB
(780) 476-2401
Reference:
Alberta Health Services. Pediatric Feeding &
Swallowing Consultation Service, Pediatric
dentist list - August 2008
98
The Compass
SECTION 4.2 FUN

Caroline Hamel
Alberta Adaptabilities Association

This association offers programs that are designed
to enhance each individuals recreation, motor skills,
life skills and creative talents. Activities are adapted
to help foster a positive experience and success.
Learn more at adaptabilities.ca.
Alberta Northern Lights Wheelchair
Basketball Society
This is a program that teaches the skills and
techniques of playing wheelchair basketball. This
organization is world renowned for its athletes. Visit
albertanorthernlights.com for more information.
Canadian Association for Disabled Skiing Alberta
These programs are aimed at instructing individuals
with disabilities in the various adapted skiing
techniques. You can read more about these
programs at cadsalberta.ca.
The Compass
Caroline Hamel
This section is focused on the fact that, despite medical

conditions or disabilities, children simply want to have
fun, laugh and play. Throughout our province, a wide
variety of programs, sports or outdoor adventures exist
for the inclusion and accessibility of all children.
We have listed some of the programs we found (there
are many more out there) that have been created for
children with accessibility requirements. There is
nothing more enjoyable then watching children have
fun and enjoy life. Take a few moments and see if some
of the programs would be suitable for your child.
F
ree to Be Me
Free to Be Me provides physical education and
programming for kids and teens with disabilities.
There are a variety of options available;
find what works best for your child at
steadwardcentre.ualberta.ca.
H
orseback Riding
Little Bits Therapeutic Riding Association is a
non-profit, charitable organization that provides
recreational horseback riding with therapeutic
benefits for children and adults with disabilities.
The waiting list can be fairly long at times; get
your name on it early. Check out littlebits.ca for
more information.
I-dance
I-dance is a program that includes both disabled
and non-disabled people who just love to dance! It
uses integrated dance techniques to focus on the
strengths of each individual dancer.
K
inder Music
Kinder Music offers music, art, drama and dance
programs for children one and a half to seven years old.
Go to kindermusik.com to learn more.
P
aralympic Sports Association
Spring programs include outdoor soccer, roller
inter-cross, roller/sledge hockey and adaptive golf.
Summer brings a variety of different day camps that
are accessible for children and teenagers. These camps
have different genres but include sports and dance.
Fall and winter programming includes indoor
soccer, teen and adult groups, sledge hockey,
wheelchair square dancing and taekwondo.
99
Accessible Sports and Programs
Wheelchair Sports Alberta

Wheelchair Sports Alberta features basketball,
sledge hockey, athletics, tennis and rugby programs.
Go to abwheelchairsport.ca to learn more.
Wheelchair Curling
You can find information on wheelchair curling at
savillesportscentre.ca/curling.aspx?p=curling_home.
SAFETY NOTE:
Helmets are essential. Dont forget that a helmet is not just

for riding bicycles. Use them for activities such as sledding,
ice-skating, and skateboarding. There is a lined helmet on
the market that keeps ears and heads warm while providing
protection during winter activities. Stores that carry these
helmets include Canadian Tire and Costco.
Caroline Hamel
Special Olympics Edmonton

Special Olympics Edmonton is a non-profit,
volunteer-based sports organization that provides
recreational and competitive opportunities
for individuals with disabilities. Learn more at
specialolympicsedmonton.ca.
S
portability Alberta CP Sports Association
Programs include bocce, soccer, cycling, athletics,
and swimming.
ccpsa.ca
SwimAbilities
This community-based, levelled swimming program
is geared for children with special needs from ages
three to 16 who need additional support to achieve
their beginning swimmer goals and to increase their
safety, independence, and enjoyment in and around
the water. Dive in at swimabilities.ca!
100
The Compass
Accessible Sports and Programs
FUNDING FOR SPORTS
In addition to applying for assistance from charities or

associations, the following two agencies are focused on
helping children involved in sports by assisting with
financial costs.
KidSport helps families with financial barriers.
Visit their website at kidsport.ab.ca or call
BIKE RIDING PROGRAM
You Can Ride Two

The Edmonton Bicycle Commuters Society, along
with a number of other partnering organizations,
helps sponsor two cycling initiatives for children
with disabilities. You Can Ride Two is a free,
community-run program that aims to get children
riding a two-wheeled bicycle. Children must be
able to pedal, steer and stop an adapted bicycle and
have a referral from a physiotherapist, occupational
therapist or an adapted physical education
consultant. Please visit youcanridetwo.ca.
You Can Bike Too
You Can Bike Too is an adapted-bicycle loan pool
that lends out modified or specialty bicycles to
children with a variety of special needs. Parents
pay a deposit which is later refunded (minus any
repair costs) when the bicycle is returned. Loan
periods range from two days to one year. For
more information on either program, please visit
edmontonbikes.ca and look under Services for Youth
and Adaptive Programs.
If you are looking to buy an adapted bicycle there are

numerous online options. In Spruce Grove, there is
SPECIAL EDMONTON SUMMER EVENTS
Dream Night at the Zoo

This event is usually held on the first Friday in
June and is free to families with children who are
chronically ill or have disabilities.
The Compass
1-888-914-KIDS (5437) for details.

Jumpstart helps cover the cost of equipment,
registration and/or transportation to help children
be involved in sports. Visit jumpstart.canadiantire.ca
or call 1-877-616-6600.
a company called Specialty Designs that customizes

bicycles, trailers and equipment to meet the needs of
the child. Check it out at specialtydesigns.ca.
There are a variety of bike trailers available online.
Here is one that we really like:
These great bike trailers can be found at rideweehoo.com.
M
onday Morning Magic K-Days
This is a free morning to enjoy the K-Days
Exhibition experience for families of chronically ill
or disabled children over the age of three. Register
early, as it fills quickly.
101
Caroline Hamel
C
amp Everest
Any child seven to 17 years
of age who has undergone
brain or spinal cord
surgery at the Stollery
Childrens Hospital can
attend Camp Everest.
Registration priority is given to campers who do not
have a summer camp alternative. A summer camp
alternative is one that is either able to meet the
campers medical needs or provides them with an
environment in which they can interact with children
of a similar diagnosis.
Lil Everest
Kids up to six years old who have had brain or spinal
surgery, their siblings and families are welcome
to a one-day camp experience filled with fun and
laughter.
Camp He Ho Ha
Camp He Ho Ha provides recreational opportunities
not only for children with disabilities but also for
adults of all ages with every type and degree of
disabilities.
camphehoha.com
102
Camp Freedom
This four-day overnight camp is for teens aged
12 18 years old with spina bifida. For information,
call the Spina Bifida & Hydrocephalus Association of
Northern Alberta at (780) 451-6921.
sbhana.org
Camp Beat It (Family Camp)
This is a Kids with Cancer Camp that is held for four
days each September long weekend at Camp He Ho
Ha and provides an indoor camping experience for
families who are at various stages of the disease and
survivorship.
Camp Kindle
The Kids with Cancer Camp provides funding
for all Northern Alberta children with cancer and
their siblings to attend Camp Kindle. This weeklong program, delivered by the Kids Cancer Care
Foundation, is open for children age six to 17 over the
summer months.
CPAA Vacation Villa - Vacation Without Limits
This program, run by CP Association of Alberta,
offers a fully accessible vacation home located in
Raymond Shores resort by Gull Lake. It is available
to members and non-members alike. Call toll free
1-800-363-2807 or (403) 543-1161 for information.
The Compass
Camp and Adventure Trips
E
aster Seals Camp (Horizon)
Horizon has a residential camping program for
children with diabetes, kidney impairments,
ostomies, burn survivors and their siblings.
They specialize in outdoor and adventure-based
programs for youth and adults with special needs,
including serious illness, developmental and
physical disabilities.
easterseals.ab.ca
Hearts in Action Camps
Hearts in Action Camps is a summer day camp for
children, youth and young adults. Hearts in Action
also has year round camps.
adaptabilities.ca
Our Lady of Queen Peace Ranch
This ranch is a recreational facility designed to
provide a FREE outdoor experience for children
with life challenges. It is a non-profit organization
that works directly with youth, families and various
agencies who work with physically, mentally,
financially and/or emotionally challenged people,
while providing a fun opportunity to experience the
natural outdoor environment. They offer day trips,
weekend family teepee rentals and much more.
There are two locations.
ourladyqueenofpeaceranch.com
Robin Hood Association
The Robin Hood Association hosts many group
programs and summer camps for children two and a
half years old and older.
robinhoodassoc.com
Rocky Mountain Adaptive Sports Centre

This organization is near the mountains and offers
accessible fun for families and individuals, including
kayaking.
W
illiam Watson Lodge
This lodge is situated in Peter Loughhead Park,
Kananaskis Country. It provides year-round
accommodations for Albertans with disabilities. They
have wheelchair accessible cottages and wheelchair
accessible trails. For reservations, phone (403) 591-7227.
TRAVEL AT A DISCOUNTED RATE:
Disability Travel Cards: Disability Travel
Cards provide identification to adult
attendants to travel with people that
have permanent disabilities at no cost
on participating Canadian coach operators
or ViaRail. The person with a disability that is
being accompanied by an adult attendant then travels
at a reduced fare. Easter Seals Canada and its members
and/or affiliates are authorized to approve reduced
fare tickets. Visit easterseals.ab.ca/site/OurPrograms/
DisabilityTravelCards.aspx for more information.
TIP: When travelling to Disneyland, Disney World,

Universal Studios or Legoland, take a few moments to
stop at the customer relations area. These parks have
passes for people with disabilities to help make their
stay a more pleasant one. If walking for long distances
is a challenge, you can also have your stroller tagged
by customer relations to be used like a wheelchair.
Notes
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103
Camp and Adventure Trips
TRAVEL INSURANCE
Travelling with children who have a medical

condition is not as easy as it looks. Here are some
suggestions from Pamela Murray, a specialist in
medical and travel insurance, to help guide you in
finding and getting insurance.
To obtain travel insurance, people are often told that if
your medical child has had no change in 90 days prior
to travel that you they are eligible for coverage. When
looking in to coverage and your child has had no medical
change for three months, LOOK DEEPER. There are
exclusions to every policy that may contradict the 90-day
rule. This all depends on your childs condition.
When you talk to an insurance agent about travel
insurance, make sure you start by telling the agent that
your situation is complex and you would like to speak to
a manager or a highly experienced agent.
Be 100 per cent honest with them tell them the
entire situation about the medical condition and future
prognosis. If you do not help the agent understand
the medical situation, they may sell you a policy for
which you are not actually covered. A lot of insurance
companies have a staff doctor that they can talk to and
understand your situation.
Talk to a manager or highly experienced agent every

time you travel as company polices change all the time. All
companies view and interpret medical policies differently,
so make sure you understand the terms and conditions.
You will also want to ask the insurance company about the
pre-existing stability clause on their policy.
There are companies out there that will provide shortterm travel polices at a higher premium. To find out what
those companies are, you can search travel insurance for
pre-existing conditions. Again, disclose all of your childs
medical information so they can provide you with the
right coverage.
Depending on your childs condition, you may also
want to consider travelling within Canada. There is no
coverage under a traditional travel policy; you would
have to investigate with an insurance broker for specific
coverage for this. It is rare and expensive. There are all
kinds of travel insurance and depending on your childs
condition, a standard travel plan available through
travel agencies will be applicable. For the more complex
situations, check directly with a broker or insurance
company.Google travel insurance and you will find a
great deal of information.
Notes
104
The Compass
SECTION 4.3 SPECIALIZED PRODUCTS

It is often difficult to find footwear for children that will
offer rigid support or have the ability to go over anklefoot orthotics (AFOs). We have listed a few options.
It is a good idea to speak with your physiotherapist
or orthotist about footwear options for your child.
Everyone has different feet and different support
requirements.
Orthotic shop
This website was recommended by an orthotist
at the Glenrose and it has a variety of shoes and
boots available that are made specifically for AFOs.
There is a handy measuring guide you can print off
to ensure accurate sizing. Go to orthoticshop.com/
manufacturers.php for more information.
your physiotherapist or orthotist about whether this

shoe is a good match for your child.
TIP: If you havent already, ask your FSCD worker

to have shoes and clothing put on your contract.
Hatch Backs
These shoes literally open up. Slide the foot in and
do the strap up. Go to hatchbacksfootwear.com
to see more.
MEC Boots
The MEC Toaster Booties cost only $27 and they
go over AFOs easily. Although they dont offer the
support a rigid shoe does, they can be used to keep
little feet warm during a stroller ride or if the child
is in a wheelchair. Mountain Equipment Co-Op in
Edmonton has many different colours and sizes.
Stonz
Stonz boots are a lightweight boot that is good to
-40 C with the insert and -20 C without. Use the
double toggle to tighten boots. Stonz boots are
made in Canada.
Pedro Shoe
If your child requires a rigid shoe, check out Pedro
Shoes. There are loads of styles and different amounts
of support. You may want to have a conversation with
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105
MOM TIPS
A mom of a young girl who loved wearing higher style boots,

like cowboy boots, was unable to find a pair that was made to
go over AFOs. She ended up taking her daughters boots to a
shoemaker and had him cut the back and insert a zipper so that
her daughter could slide her foot in. Brilliant! We love this trick
and cant wait to try it out.
You can also find a variety of shoes at regular stores that would
work. You should look for ones that tend to be a bit wider to have
room to slide the AFO and foot in easily. You may have to go up
one size and try taking the insole out, if possible. Have the AFOs
with you to try them out before making your purchase.
Special AFO socks can be very pricey to purchase. Some stores
such as Childrens Place have thin cotton socks with grips on the
bottom that can be pulled up high to fit the height of the AFO.
You can often get three pairs for $10.
Another mom suggested the use of something like a cleat skin

to cover over your childs running shoe if it is dirty and
muddy out to help protect your AFO footwear. Go to
cleatskins.com for ideas.
THIS AND THAT
Glasses
Miraflex offers top-quality frames. They are
designed with the child in mind, whether a few
months old or an adolescent. Miraflex has over
20 years of experience with childrens eyewear
and offers the largest range of childrens frames
designed by experts to satisfy the more demanding
professionals requirements. These glasses are hinge
free and metal free.
W
alking helmets
Protecting children from falls when walking or
from injury during sports is very important. This
site offers a variety of helmets, even ones that can
be customized for children with large or very small
heads, at kidsafetyhats.com.
106
Nammu Swimming Hats

Water hats made for children with hearing aids,
implants or tubes.
nammuhats.com
Silka Wear Bonnets

These are hats for children with hearing aids or
cochlear implants.
silkawear.com
The Compass
Clothing
This site offers easy access clothing for all age
groups.
easyaccessclothing.com
Koolway Sports
Koolway Sports designs outerwear for people
in motion while enabling them to achieve their
maximum level of independence in all aspects
of life.
koolwaysports.com
eekaroo or Special tomato

K
Finding a chair that provides support and durability
can be a difficult task. This chair is amazing! We
love it. There are many makes and models of this
chair. It comes with the tray if youre using it as
a highchair. Both foot rest and seat board can be
adjusted. The cushions come in a variety of colors
and are washable. They also have a seat cushion that
is flat for older children, and footrests are an option.
Special Needs Life Jackets

pfd-a.com
Walking Canes
This site ships to Canada and sells all types
of walking aids from Forearm Crutches to
Quad/Tripod Canes and accessories.
walkeasy.com
TIP: If you get a referral from an occupational therapist
you can apply to an association or charity to help with
the cost of some of these specialty items.
Pediatric Single Cane

wayfair.com
TIP: Some Superstore locations sell a range of

pediatric canes.
The Compass
107
JACK-OF-ALL-TRADES
Lets be honest a parent is not only mommy or daddy.

We wear many hats, especially when our children have
medical issues or disabilities. One of those many hats
is that of the inventor. Below are a few adaptive ideas
from crafty parents.
Stairs, parallel bars and ladders
Specialty equipment is very expensive, but if you
have a reliable handyman, it is possible to have
equipment built for your home at a reasonable
price. Here are a few items that we have had made.
Bikes
Biking is a great activity that helps children
strengthen their legs with pedaling and their arms
with steering, and it can promote independence.
This trike was purchased at Toys R Us and an
uncle and shoemaker made the foot pedals. Biking
at the mall in winter can keep your child active.
One family adapted the bike on a treadmill for

their son. He is a mild paraplegic, so the treadmill
set on very low helps with initiation of the
pedaling motion. This is an idea, but it is essential
that mounting is secure and your child is always
monitored.
Online and catalogue equipment resources
- Flaghouse: flaghouse.com
- Abilitations: abilitations.com
- Special Needs Toys: specialneedstoys.com/can
- Adaptive Mall: adaptivemall.com
- Sensory Edge: sensoryedge.com
- E-Special Needs: especialneeds.com
Notes
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Notes
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109
Notes
110
The Compass
CHAPTER 5:
Stories of Coping
Illustration by ROBERT CARTER
Chapter 5: Stories of Coping

113


The five stages of grief
Resources
116

SECTION 5.2: REAL-LIFE STORIES

Sibling support information and stories from siblings
CHAPTER 5:
Stories of Coping
Most parents agree that having children is one of the most rewarding and amazing life
experiences. Your heart feels like it literally doubles in size. When you receive the devastating
news that your child has medical issues or disabilities, the emotions you feel can be
overwhelming and difficult to deal with.
Everyone travels a different emotional path and will find different interventions helpful in
coping. It is important to be aware of some of the emotions you might experience and be aware
of some of the warning signs that you might need to seek professional assistance.
There are five stages in the cycle of grieving. We chose to include this because we found that
each of us had one way or another travelled through the stages. It is important to read it be
aware that you may go through this.

Five stages of grief
DENIAL
I cant believe this is happening to me.
Robert Carter
If you are experiencing any of these emotions, it

may help to know that your reaction is natural and
that youll heal in time. However, not everyone who
is grieving goes through all of these stages, and thats
OK. Contrary to popular belief, you do not have to
go through each stage in order to heal. In fact, some
people resolve their grief without going through any
of these stages. And if you do go through these stages
of grief, you probably wont experience them in a
neat, sequential order, so dont worry about what you
should be feeling or which stage youre supposed to
be in. Grief can be a roller coaster instead of a series
of stages; we might also think of the grieving process
as a roller coaster, full of ups and downs, highs and
lows. Like many roller coasters, the ride tends to be
rougher in the beginning and the lows may be deeper
and longer. The difficult periods should become less
intense and shorter as time goes by but it takes time to
work through a loss.
-Hospice Foundation of America
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113
Five Stages of Grief
BARGAINING
Make this not happen, and in return I will ________.
DEPRESSION
Im too sad to do anything.
ACCEPTANCE
Im at peace with what happened.
Robert Carter
ANGER
Why is this happening? Who is to blame?
114
The Compass
Five Stages of Grief
RESOURCES
Hints for caring for yourself

We have compiled some suggestions from parents that
might be helpful during this stressful time.
Reach out to friends and family.
Friends and family care about you and want to
support you during a difficult time. Often others
want to help but dont know how, so tell them what
you need. If you find it difficult to verbally tell them
use email, text or Facebook. We have also included
a friend and family section that you may want to
share.
Attend a support group.
You can feel very lonely, even when you have loved
ones around. Meeting with other people who have
shared similar experiences can be very good for your
mental health and well-being.
Visit neurosurgerykidsfund.com often and watch
for events we hold for families, moms groups and
siblings. Search for other support groups in your
neighbourhood or social circle.
Take care of yourself.
Combat stress and fatigue by getting enough rest,
eating well and exercising. Even taking a short
walk each day might help. Finding relaxation
techniques such as deep breathing or meditation
might be helpful.
Talk to a therapist or counsellor.
If you find it is very difficult to deal with your
emotions regarding your loved ones medical
challenges or death then seek professional help.
You may need to try a few therapists before you
find the right one, but when you do they can be a
tremendous resource for dealing with emotions.
Many companies have coverage for these services, so
inquire with your provider.
RESPITE CARE
If you are a primary caregiver, you may need a break.

Respite care provides temporary care for your loved
one. There are a variety of agencies that provide respite
services, including:
Adaptabilities centre-based respite
adaptabilities.ca
Postnatal Care in-home service for all ages
Skills centre-based respite
skillsedm.com
Transitions St. Albert and area
transitions-ab.org
Robin Hood Association in-home service
robinhoodassoc.com
YWCA
ywcaofedmonton.ca
GRIT
gritprogram.com
The Compass
Here are a few counselling resources in Edmonton.

CASA is a major community-focused provider
of mental health services for infants, children,
adolescents and their families, located in Edmonton
and serving central and northern Alberta.
casaservices.org
Catholic Social Services
(780) 420-1970
catholicsocialservices.ab.ca
City of Edmonton Community Services
(780) 496-4777
edmonton.ca
Cornerstone Counselling Centre
(780) 482-6215
cornerstonecounselling.com
The Counselling Centre
(780) 478-0065
Hope Foundation of Alberta
(780) 492-1222
ualberta.ca/hope
The Family Centre
(780) 424-5580
the-family-centre.com
Jewish Family Services
(780) 454-1194
jfse.org
McMan Counselling
(780) 482-4461
mcman.ca
Pastoral Counselling Group
(780) 482-4461
pastcoun.com
Another option for respite care workers would be

posting an ad at places such as local churches, the
University of Alberta job board, Grant MacEwan
(childcare programs), local schools, a local paper, or
asking friends and family for a referral.
115
SECTION 5.2 REAL-LIFE STORIES OF COPING

One of the major driving forces for this book was that each of us parents remembered an overwhelming sense of fear
during our childs medical journey, and the feeling that we were alone.
It felt like no one could possibly understand the anguish we felt or that no one had been through this before. In fact,
this road has been travelled. This section is a personal compilation of stories of remarkable children, parents, friends,
family and health care workers who have walked on the difficult path before you. Let these stories be a reminder to you
that you are not alone.
WELCOME TO HOLLAND
I am often asked to describe the experience of raising a

child with a disability - to try to help people who have
not shared that unique experience to understand it, to
imagine how it would feel. Its like this......
When youre going to have a baby, its like planning
a fabulous vacation trip - to Italy. You buy a bunch
of guide books and make your wonderful plans. The
Coliseum. The Michelangelo David. The gondolas in
Venice. You may learn some handy phrases in Italian.
Its all very exciting.
After months of eager anticipation, the day finally
arrives. You pack your bags and off you go. Several
hours later, the plane lands. The flight attendant comes
in and says, Welcome to Holland.
Holland ?!? you say. What do you mean Holland??
I signed up for Italy! Im supposed to be in Italy. All my
life Ive dreamed of going to Italy.
But theres been a change in the flight plan. Theyve
landed in Holland and there you must stay.
The important thing is that they havent taken you
to a horrible, disgusting, filthy place, full of pestilence,
famine and disease. Its just a different place.

So you must go out and buy new guide books. And
you must learn a whole new language. And you will
meet a whole new group of people you would never
have met.
Its just a different place. Its slower-paced than Italy,
less flashy than Italy. But after youve been there for a
while and you catch your breath, you look around....
and you begin to notice that Holland has windmills....
and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going
from Italy... and theyre all bragging about what a
wonderful time they had there. And for the rest of your
life, you will say Yes, thats where I was supposed to go.
Thats what I had planned.
And the pain of that will never, ever, ever, ever go
away... because the loss of that dream is a very very
significant loss.
But... if you spend your life mourning the fact that
you didnt get to Italy, you may never be free to enjoy
the very special, the very lovely things ... about Holland.
SOURCE:
1987 by Emily Perl Kingsley
All rights reserved
Reprinted with permission of the author
116
The Compass

MY HERO MY SON by Melissa Da Silva
Joshua spends every moment of his life inspiring others

with his determination and desire to achieve. His
beautiful little smile can simply melt your heart.
August 4, 2010: Joshuas birthday was one of the
happiest and most heartbreaking days of my life.
I remember it like it was just yesterday. I can picture
every detail and feel those exact emotions. I was 36
weeks pregnant and after an unremarkable day, I had
an overwhelming feeling that I needed to go to the
hospital. Maybe it was faith; some call it mothers
intuition.
A relatively normal assessment quickly changed with
the onset of a single contraction. In this very moment,
my baby became extremely distressed and despite
countless interventions he was not responding. Fearful
and afraid, the nurses immediately called a Code Pink
an obstetrical emergency. The life of a mother and child
hung in the balance.
My son was born by emergency cesarean section and
in the early moments of his new life he was fighting
against death. My beautiful six-pound baby boy was
fighting a medical battle of astronomical proportions.
Joshua had a life threatening condition called
disseminated intravascular coagulopathy (DIC) that
caused his blood to become extremely thin and made
him very sick. It is believed that at the time of that
single contraction, Joshua began bleeding in his brain,
suffering a hemorrhagic stroke.
This was the darkest time in my life.
I remember sitting next to my sons bassinet in the
middle of a busy, loud NICU filled with nurses, doctors,
families and friends; I felt so alone. I was scared and
lost. I was bargaining with God and I was angry and
heartbroken.
After 19 long days in the intensive care, my baby boy
Joshua made it home. He fought hard, and with the
love of his family and the knowledge and skills of the
Stollery ICU staff, he survived.
We finally went home, and we were together like a
family should be. My husband and I were committed
to providing our children with unconditional love and
support, despite our fears of the many unknowns for
Joshua. We didnt know if our precious baby was blind
or deaf; we didnt know if he would ever walk; we
didnt know if he would ever talk. Would we ever hear
The Compass
mommy and daddy spoken from his lips? Only time

would tell.
Just when we felt like we were getting into a routine,
our sweet boy became seriously ill with a respiratory
virus and he struggled to breathe. He was so weak he
barely had the strength to hold his head up. Joshua
spent over two weeks in the Stollery once again.
It was during this hospitalization and a random
elevator ride that I first encountered a member of
the pediatric neurosurgery team, Dr. Pugh. Tired and
crying I bombarded him with questions about stroke
complications, stroke recovery and surgery. Having
never met my son he still spent time with me and
shared his knowledge. Genuine and kind, his exact
words to me before we went our separate ways were,
If you need us, we will be here.
We didnt know if our precious baby was

blind or deaf; we didnt know if he would
ever walk; we didnt know if he would ever
talk. Would we ever hear mommy
and daddy spoken from his lips?
Only time would tell.
Seven months later, Joshua would in fact require
the help of the neurosurgical team. He required brain
surgery for a VP shunt at 14 months old. His head was
rapidly growing and the only remedy was surgery.
Dr. Pugh and Wendy Beaudoin took us by our hands
and with compassion and knowledge led us down this
very difficult path. Answering our every question, never
rushing an appointment, and having genuine care for
our family made it easier to hand him over to them in
the operating room on September 20, 2011.
Now at three years old Joshua continues to amaze
us with his drive and motivation. He has undergone
countless procedures, surgeries, scans and appointments
that are reflected in the hundreds of Hope Stones he
has collected already. The hope stones are a symbol of
a difficult medical journey, but they are even more a
symbol of what we have overcome as a family.
Joshua has accomplished so much in his short life and
we are so tremendously proud of him, and we are in
love with him and his brother.
117
Stories from Parents
SISTERS by Melody Willier
My husband and I are blessed with two amazing girls.

Like all new parents, we were thrilled when we found
out we were expecting our first daughter. Addelyn
joined our family in 2009, and she was beautiful.
At birth, she inhaled meconium and was taken away
from me with breathing problems. She was transferred
to a different hospital than the one in which we
delivered. I remember being heart-broken and feeling
helpless; I only got to hold her for a few seconds before
she was transferred. Her dad was right by her side the
entire time, already showing us how great of a father
he would be. We spent six days in the hospital as she
learned to breathe and eat on her own. We took our
baby girl home and began our journey as a family,
expecting that our trauma was over.
It wasnt until she became ill at seven months with
a respiratory infection that the doctors began to raise
concern about her development and low muscle tone.
It was at this moment that we realized our lives will be
changed forever. Blood work, tests, physiotherapy, and
treatment programs were now going to be a daily part of
our lives. Addelyn is now an active and bright four-yearold. She has started to walk this year and continues to
show us that she is not stopping but moving forward. We
are so proud, and we admire her strength.
Optimistic and hopeful, we decided to have another
child. We were reassured from the doctors that it was
less than a one-per-cent chance our next child would
have any medical issues. In July of 2011, our baby girl
was born five weeks early at three pounds, 11 ounces.
We spent 33 days in the NICU where they discovered
she had two holes in her heart. After 10 months, the
medical team decided that one of the holes in her heart
needed to be repaired because she was not growing
or developing. In May of 2012, Claire had open-heart

surgery. In the summer of 2013 she had an MRI, which
showed that she has a tethered spine and severe
scoliosis. This is the point that we officially became part
of the neurosurgery family.
Claire is being watched and monitored and will need
multiple surgeries including spine surgery in her
future. We know we have struggles and a lot of work
ahead of us but she is our angel and we will do whatever
it takes to make sure she is moving forward. She shows
us every day that she is determined, hardworking and
stubborn.
Both girls had genetic tests done and they both
have a rare chromosome imbalance. We do not have
a true diagnosis and are unsure of what the future
holds for them. We are certain, however, that we love
them unconditionally. With the help of therapies and
specialists we are certain we will be sending our girls in
the right direction to succeed.
As a parent of undiagnosed children, it is hard
to move forward not having any answers and it is
challenging to know where you belong or what
direction to go. Trust that your child will show you
and lead you in the direction you need to go. You will
be surprised at the obstacles you will face and you will
always find the strength to keep going. Always trust
your gut as it will never lead you astray; there may be
times when you have to disagree with a situation, but
know that it is OK to stand up for what you believe in,
and get educated on the decision you must face.
People say to me all the time, I could never do what
you do. I always look at them and say, Yes you could,
its that simple. Yes you could, yes you would and yes
you can! My children are my heroes and inspiration.
OLIVIAS JOURNEY by Wendy Beaudoin
Dec 30, 2013

My name is Wendy, and I am the nurse practitioner for
pediatric neurosurgery at the Stollery Childrens Hospital
and a co-founder of the Neurosurgery Kids Fund. More
importantly I am the mother of Olivia, my 10-year-old
daughter who has had 29 surgeries, most of them on her
brain or spine. On January 7th she will undergo her 30th
surgery. In talking to my good friend Melissa, a mother
of a neurosurgical patient, we thought this section
might be helpful in many ways. For some of you, it may
provide comfort to know others are struggling, thinking
or feeling things that you may have thought but were
afraid to say out loud. For others, it may be your first
insight into the daily struggles of having a chronically
ill child. Whereever you are in your journey or whatever
your relationship is with the Neurosurgery Kids Fund, I
hope you find this blog informative as we travel together
through the next few weeks.
118
See page 153, where we have included

excerpts from Wendys blog as she travels
through Olivias medical journey. This
blog is especially powerful because it is
written with the utmost honesty about
family, friendship, mental health, fear,
gratitude, unconditional love and hope.
Also find the blog at facebook.com/neurosurgerykids
The Compass
COURAGEOUS COHEN by Tammy Samoil
I am the proud mother of three boys. Cohen is our

youngest son. On August 20, 2012 he was admitted to
the Stollery Childrens Hospital emergency with a high
fever, vomiting, severe lethargy and two different types of
rashes. We thought he had the symptoms of meningitis,
but it was a severe blood infection.
By the late evening of August 22, Cohen was admitted
to the Pediatric Intensive Care unit. The doctors told
us that Cohen had suffered eight to 10 strokes, the
infection was attacking his heart and an infected growth
was damaging the valve in his heart. On August 23, 2012
our little Cohen had open heart bypass surgery. It was a
tremendous success. The surgical team was able to take
off the growth, but they needed to replace one of Cohens
heart valves as it was severely damaged by the bacteria.
He will require at least two more heart surgeries as he
continues to grow to replace the valve.
As Cohen started his recovery in the cardiac section
of the PICU, he seemed to be improving. He was still
on many IV antibiotics and drugs, but he had started
speaking again and had about eight to 10 words before he
was moved to the regular ward.
Ill never forget the night of September 7, 2012. The
Rapid Response Team took Cohen back to the intensive
care. An aneurysm, unruptured, was making the pressure
in Cohens brain mount and placing him in grave danger.
Cohen had a tube inserted into his brain to drain this fluid
and relieve the pressure. He also suffered seizures. Soon
after, doctors sent Cohen in for an angiogram and inserted
glue into his head to hold the aneurysm in place to prevent
further brain damage. The aneurysm burst under the
pressure of the glue, but the glue held the clot in place.
Just as we seemed to have brought this under control,
Cohen then developed vasculitis and was put on high
doses of steroids. This seemed to have cleared up so
Cohen was taken again for another angiogram to get a
better look at his vessels and arteries. We never thought
JACOB by Soula Milonas
Jacob has fought for survival from the moment he

entered this world. Born extremely premature and
weighing only one and a half pounds, he was very
vulnerable and frail. At only 12 days old, tiny beautiful
Jacob contracted meningitis making him fight even
harder to stay alive.
Just a few days shy of being one month old, Jacob was
taken to the operating room and Dr. Aronyk inserted
a shunt to help relieve the pressure from the CSF fluid
filling in his brain. Little did we know this was only the
beginning of our long medical roller coaster ride. After
six months in hospital Jacob was ready to finally go
home. He lasted four days at home and ended up with
an infection that spiraled into eight more months in the
hospital and many more surgeries.
The Compass
hed have an allergic reaction to the angiogram dye,

especially since hed already been exposed to this only a
week before. Cohen had an anaphylactic reaction. His
run of very bad luck never seemed to end and he couldnt
catch a break.
Throughout this second stay in PICU, we still werent
sure how Cohens vision was affected and what exactly
he could see. We knew his right side was severely affected
by his first set of strokes and now the left side of his body
was severely impaired from the aneurysm. If that wasnt
enough, we were extremely worried as Cohen hadnt
said a word or acknowledged any sort of understanding
for weeks after the aneurysm. During this time Cohen
still required the tube in his head to help drain the fluid,
our options were fairly limited and it looked like Cohen
would need a shunt. So, after many conversations with
our neurosurgeons, we tried a third ventriculostomy
surgery. Although initially his pressures looked like
they were dropping, Cohen ultimately still had to have
another surgery for the VP shunt placement.
Cohen is very motivated, stubborn and

determined: all amazing qualities to have for
someone who recently became very ill, recovered
and is now on a new journey of rehabilitation.
On November 4, 2012, Cohen was discharged from the
Stollery after 77 days, 55 of which were in PICU. Cohen
is truly our miracle child. Our ultimate goal for him is
to be able to walk again and I know some day that will
happen, just not for a while. But for now, he is a happy
child learning to move again on his own terms and in
his own ways. Cohen is very motivated, stubborn and
determined: all amazing qualities to have for someone
who recently became very ill, recovered and is now on a
new journey of rehabilitation.
Jacobs battle continues to this day. He has cerebral

palsy, svc (blood clot syndrome), seizures, stomach
cysts, irregular heart rate, and blood pressure issues and
is on multiple medications. Jacob has had 92 operations
and over 300 procedures/scans in his short 13 years.
He has been on life support and we have come close to
losing him many times.
Although the journey has been hard, sad, and scary,
it has also been amazing, beautiful and life-changing.
Jacobs strength and fight for life is unreal. I thank the
Stollery Childrens Hospital, pediatric intensive care,
the neurosurgical team (Wendy, Dr. Mehta, Dr. Pugh
and Dr. Aronyk), unit 4D staff and everyone else who
holds the hospital together. My Jacob is still here and I
am so grateful!
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God only knows how much longer I will have with this
amazing little hero, and I take in each second of everyday
and hold on to every smile, laugh and memory as tight as I
can. Even though its been so hard, I feel so lucky to be his
mom and be part of his journey along with all the amazing
family and friends that are right here every step of the way.
Every day we wake up we have a choice: we can be
angry, frustrated and unhappy or we can live like Jacob
and be happy and grateful, taking on whatever life
throws our way. We make every smile count and share
love, hope and strength with all those around us! Jacob
is a true superhero, he is my world and he has taught
me more than I could ever teach him. Im the luckiest
mom in the world to call him my son!
After his 90th (yes, 90th) surgery, Jacob meets the warm and
tender touch of his beautiful mother, Soula. It truly is amazing how
love can emanate from a photo.
MY NEUROSURGICAL JOURNEY by Ashley Mullins

My medical story began when I was 14 months old. I was
born with a cavernous malformation. One day my mom
had noticed I was dragging my right leg and couldnt use
my right arm properly. I was having a hard time keeping
food down. My mom decided it was best to take me
in to see a doctor. So I went and had an MRI. We got
the results I had a brain hemorrhage. I had a 12-hour
surgery, with Dr. Aronyk as my surgeon. My chance of
surviving was less than 25 per cent.
I made a full recovery but had MRI scans on a regular
basis. I grew up healthy, active and happy playing sports
and doing hip hop dancing. When I was 12 years old, I
was doing my first photo shoot ever as I was interested in
modelling. I remember I was having a hard time holding
myself up, getting very clumsy with my whole right side.
I also had a fall at school one day and knew something
just wasnt right. So my mom took me in to see the
doctor and to get an MRI. I had hemorrhaged again. It
was a 12-hour surgery. I remember all my family and
friends were so worried and crying as I was going in to
the OR. I was scared but I knew in my heart that it would
be OK in the end.
The doctors had told my family that they were
expecting me to be in a coma for up to four months. I
actually woke up on the operating table as they were
bandaging my head up. Everyone in the OR was clapping
and cheering and I knew exactly where I was!
After my surgery I was in the University hospital
for about three weeks before I got transferred to the
Glenrose Rehabilitation Hospital. I had to relearn
how to walk and talk. I was in occupational therapy,
physiotherapy and speech therapy. I had to re-train my
whole right side of my body and my mouth to work
again. The simplest things would be so hard for me,
like picking up a pencil or just sliding a cloth across
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the table. There were days when I just wanted to give

up completely. But I got through each day knowing
my friends and family were always there for me. My
rehabilitation continued for about eight months and
I was almost ready to go back to school full-time until
we realized I wasnt feeling myself yet again. I went in
for another MRI and the results had shown another
hemorrhage. This time I was sent to Calgary because
they had an MRI machine in the operating room.
My friends, family and even Dr. Aronyk and Wendy
Beaudoin from Edmonton came to be in the OR. That
made me feel so much more at ease with the 14-hour
surgery I was about to have. They told me and my family
that because the surgery had to be so aggressive to cure
me that the chances of not walking again were very high.
At that moment my heart just sank. All the memories
I had of me running and playing sports just flashed in
my head. I then realized that my life would never be the
same. What I once knew could be gone forever.
With having more challenges than I ever thought
possible each day was a struggle beyond my wildest
imagination. My doctors, my family and my friends were
by my side every moment. Together, we got through
each day. I fought as hard as I could. With strength, hope,
courage, love and faith Ive made it through. To this day I
still work on my walking and I love to do volunteer work
and fundraising for sick children. I work for the Stollery
Childrens Hospital for my doctor and nurse and look
forward to my future and helping sick children in any
way I can.
I am so blessed to have the life I do. Is my life a
struggle? Yes. But that doesnt stop me from doing the
things I love! I can do basically everything, just in a
different way.
The Compass
MY BOY by Deanna Schultz
Caleb swims, rides horses, zip lines, camps, sings, skates

and plays hockey, goes to concerts, plays video games
and the computer and enjoys anything and everything
fun. He has a wonderful sense of humour and wit, is
confident and aspires to be a puppeteer or actor one
day. He is also a teenager who is in Grade 7 and is
sassy and a little moody at times. Overall, he is just an
average kid who enjoys his life.
Caleb was born at 27 weeks weighing one pound 13
ounces, and he was 12 inches in length. This is the same
as two bricks of butter and an unsharpened pencil.
Because of the prematurity, Caleb has been diagnosed
with moderate spastic quadriplegia (affecting all four
limbs) cerebral palsy or severe spastic diplegia (both
legs) cerebral palsy.
It is a very trying time when you first receive a
diagnosis. Your worries can consume you and it is very
overwhelming. What I can tell you is that it gets easier
and you can adapt. For me, the first couple years were
the hardest. Not only was Calebs body premature
but his immune system as well. We spent 19 months
of the first three years in and out of the hospital with
respiratory issues, aspiration and reflux and finally
LITTLE D by Lindsay*
We tried for months to find out what was wrong with our
son. His weight dropped, he stopped meeting milestones
and he continued to regress and deteriorate to the point
where he looked like he did not even want to go on
anymore. We stressed and searched and finally 10 months
later, after numerous tests and procedures, an MRI finally
gave us our answer. Your son has a tumour in his spinal
cord. The tumour is very large; it starts at the top of the
spine and goes approximately halfway down his back. We
will be operating in 10 days and you need to get him to
gain as much weight as possible before then. I know this is
a lot to take in. Do you have any questions right now?
OK is the only word that escapes my mouth.
Everyone leaves the room; we both sit there and stare
straight ahead, we stare at each other, we stare at our son
and then we cry. My ears are ringing and I have one of
the worst migraines ever. I feel very alone. My marriage
has been unravelling from the previous months of stress;
I am 27 and pregnant with our third child, who is due to
arrive in less than a month from this exact day. The next
10 minutes are full of crying and a few short sentences.
Oddly enough I feel relief. We finally have an answer and
they are going to fix our son.
The next 10 days somehow fly by yet still feel like an
eternity. We dont talk about the surgery; we enjoy every
minute we have together. Tomorrow morning is the
big day. My nerves are starting to rattle and I am feeling
more anxious as I listen to the clock on the wall tick
away. I dont sleep at all; I sit in a rocking chair holding
The Compass
having a G-tube inserted to help him with his feeding

and swallowing. This was not including all the regular
appointments for cardiac echoes, MRIs, x-rays and
numerous other tests. Life was pretty exhausting during
that time.
Once we were out of the medical crisis, things calmed
down. Caleb learned to sit up at three years of age,
walked with a walker at four, outgrew his G-tube at
five, and has kept progressing ever since. There have
been some other medical interventions such as botox
for spasticity and orthopedic surgery but he continues
to progress and be stronger every day. This year he was
able to stand up on his own without any assistance.
I am proud of my son every day for the things he has
accomplished and for what he strives to do. He is in a
wheelchair but has never let his disability define him.
He has spoken in front of hundreds of people, young
and old, in regards to how his disability affects him. His
motto in life is Its not how you do it. Its that you are
doing it. He never says he cant. He says I can just
differently. He has changed my life and inspired me to
do better, be better and try harder. It is because of him
that I am who I am today.
our son as tight as I can. I just stare at him and pray. At

seven in the morning all too soon they come for us.
During the surgery minutes in each hour feel like an
eternity. We receive word halfway through the surgery
that everything is going wonderfully, as well as can be
expected. I continue to pray. We are finally able to see
our son in PICU nine hours later. We are warned what
to expect: tubes, machines, equipment. I am not shocked
by any of it, I am just so thankful I can finally see him
again. The first few nights are awful. The worst part as a
mother is not being able to pick him up and hold him. I
feel completely helpless and beat down.
Your son has a tumour in his spinal cord.

We will be operating in 10 days and you need
to get him to gain as much weight as possible
before then. I know this is a lot to take in.
Do you have any questions right now?
As the days go on he continues to get better and he
is able to move from PICU up to the unit. Three weeks
later we are finally home. Life is so busy, appointments
are the new normal, rehab is just part of our daily
routine, and we spend a lot of time in the car. After nine
months of gruelling rehabilitation our son is walking,
pushing a walker. It is truly amazing.
A follow-up MRI shows the tumour is growing back
and we learn that at the age of 18 months our son is
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going to have surgery again. It feels way worse than it

did the first time. I am scared, but mostly I am angry. I
am so angry that my son has to endure this situation not
once, but twice. The surgery is another very long surgery,
and just as hard on everyone as the previous one. There
are more complications during the surgery than the
first time, and we have more to deal with after the fact.
I am relieved the surgery is behind us and we can move
forward to the next step: rehabilitation. Our son will
walk again, I am very confident of this. We are told that
because of all of the complications during the surgery,
he is no longer a candidate for more surgery and if the
tumours come back our only option is radiation.
Two months later my heart is ripped out of my
chest for a third time. I know without a doubt that the
tumours are growing back. It is confirmed in our clinic
LAUCHLIN by Kaela Hendra
Lauchlin was born at 25 weeks and six days to his

parents surprise, weighing in at one pound, 15 ounces.
This meant he would stay in the NICU for three and
a half months and have lots of tests for all of his little
organs. Our initial round of tests discovered early on
that he had what the doctors described as a bleed
in his brain, but the hope was that it would clear up
without surgical intervention. The neonatologists
watched it closely with on going head ultrasounds and
We were just praying for a healthy baby,

whatever that meant at this point.
There were a lot of tears and moments of
why us? But we couldnt get stuck there.
measurements. It wasnt clearing up; we would need
to have close follow-up after release from the NICU.
We were so overwhelmed by everything going on in
his little body. We were just praying for a healthy baby,
whatever that meant at this point. Getting answers was
next to impossible and no one could tell us what our
future held and what struggles our family would face. It
was terrifying. There were a lot of tears and moments
of why us? But we couldnt get stuck there.
When we went to see Wendy and Dr. Pugh after
his release, more tests came in the form of CT scans
and MRIs, lots of them, until one day Dr. Pugh wasnt
there and we met with Dr. Mehta. His latest MRI
wasnt good; his hydrocephalus was progressing and
he needed a VP shunt, and quickly. Dr. Mehta told us
the risks and the benefits, and told us this is our reality.
Our five-month-old baby, our nine-pound baby, would
need surgery in two days. We spent that day preparing,
getting ready for our son to have a catheter put into his
brain and run down his little body, into his abdomen. It
was terrifying. Lauchlins lungs were not strong and the
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visit and I am hit by an imaginary train at full speed.

This is our last hope, the doctors tell us. If this does not
work, we are out of options. He goes through 28 high
dose radiation treatments and is so sick he is hospitalized
for four weeks. In everything he has been through I have
never seen him as sick as he is now. My heart shatters
into a million pieces. I feel completely helpless. I feel
guilt how could I, as a mother, let my child endure
something so horrible? But I know in my heart this is
truly going to be the answer to our prayers. I know it to
be true with every fibre of my being.
Our son has been cancer free for two years and two
months! It is amazing to know in your heart that cancer
is no longer plaguing your child. Its amazing to see how
far he has come and how far our entire family has come.
* Name withheld
last time he had surgery (at the NICU) resulted in him
being intubated for days. There were a lot of tears, and
more why us. Once again, Lauchlin was the strong
one and we had to follow suit. We would get through
this and we would do it together, no ifs, ands or buts.
On the leap day in 2012, just one day short of his
five-month mark, Lauchlin was in the OR with multiple
doctors and nurses. He had the best team possible and
we were so thankful for that. He had the VP shunt put
in place and rocked the surgery! Our miracle babe did it
again, no issues!
We stayed at the Stollery for five days. It was hard
to flash back to our beginning at the NICU, to be
the family with a sick kid. This was our reality; we
couldnt show off our baby like most do, there were no
trips to family and friends, no big baby showers and we
were the bubble family. Sometimes I would just sit
and cry. My beautiful baby was fighting for his life and it
wasnt fair. Why us? But there it was again it was our
reality. Once again we focused on the positive, fought
as hard as Lauchlin fought and got through it. He was
ours, he was here, and that was enough.
Lauchlin is doing amazing. He has only needed one
shunt revision (surgery to replace a portion of the
catheter), which went great. We watch closely for any
developmental delays as that would be common with
his diagnosis, but we are so lucky. Lauchlin has been
developing at a rapid pace and is catching up to his
peers. He is such a happy boy and has the best laugh.
He is his own safety enforcer and is constantly telling
others to be careful. It seems he doesnt want anyone
else getting hurt. What a thoughtful young man.
Lauchlin continues to visit the neurosurgery team
once every three months. This visit usually entails an
MRI, and a chat with Wendy, Dr. Pugh, or Dr. Mehta.
We welcome these visits and the peace of mind that
comes with them. We are so thankful to have their
support and expertise in our lives.
The Compass
We are now pregnant with our second child and

anxiously awaiting a little brother for Lauchlin. We
know he will be the best big brother. His laughs and
hugs get us through. We still have the tough days, full of
BRAIN POWER by Kelly Smart
My dear daughter was breech. I had to have a C-section

to deliver her because of her breech position. When
they took her out I was ecstatic and full of love and joy
that my baby girl was finally here. I noticed right away
that her head looked a bit strange. I asked the nurses
in the hospital about it and they assured me that it was
fine. At her two-week weigh-in at the health centre I
asked another nurse. She said she would refer us to the
Head Shape Clinic at the Stollery Childrens Hospital.
That is where our journey with Dr. Mehta and Wendy
began. At the age of four weeks we met with them.
Wendy took one look at my baby and said she had
sagittal synostosis and that she would need surgery to
correct it.
I sat in the corner and cried my eyes out. I couldnt
fathom the idea of my tiny baby girl having to have to
go through a surgery at such a young age. I was a mess.
I cried for days. I kept apologizing to my baby for what
she was about to go through. I thought it was my fault,
that I did something in pregnancy that caused this.
Later I found out that this wasnt the case at all. Theres
nothing you do to cause it it just happens. She was
scheduled for surgery on April 16, 2013 at the young age
of 11 weeks old. The days leading up to the surgery, I
was a mess. I couldnt eat, couldnt sleep, and couldnt
stop crying. I knew we were in great, capable hands
with Wendy and Dr. Mehta but it was still hard to
process. When the nurse came to get my baby, I handed
The Compass
vomit, headaches and nights in the ER, but they are few
and far between. We are strong, we are together and
that is our reality.
her over with a heavy heart and almost dropped to my

knees with anguish, worry and heartache. It was the
hardest thing I have ever had to do to hand her over.
The next few hours felt like it took forever. Finally we
saw Wendy and she said it was all done, and that our
baby girl did amazing. Tears of joy came rushing out.
I couldnt fathom the idea of my tiny

baby girl having to have to go through
a surgery at such a young age. I kept
apologizing to my baby for what she
was about to go through.
The worst part was over. We spent the next two days
at the Stollery Childrens Hospital while she recovered.
She had some swelling but she was in good spirits.
We went home and a few weeks later got her helmet
a cute light one with butterflies on it. She wore her
helmet for about four months and when it was all over
she had a beautifully shaped head. Looking back now I
am so glad it is over, but I know it was worth it. Wendy
and Dr. Mehta did an amazing job and have been
fantastic through the whole process. We could never
thank them enough for their expertise and knowledge
and what they did for our daughter. To everyone
involved: thank you, thank you, thank you from the
bottom of our hearts!
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GRAHAM by Andrew Powell
Graham was diagnosed with hydrocephalus (water

on the brain) although his first surgery revealed an
arachnoid cyst (a cyst in the lining of the brain).
The first indication that something wasnt right with
my son, Graham, was the early onset of puberty. If it
sounds like Barry White is in your living room and it
turns out to be your seven-and-a-half-year-old son, you
might want to look into it.
That first moment of realization starts a whirlwind
of thoughts and emotions, most of which have no logic
behind them, no foundation in fact, and all of which
have very unhappy endings. So you head to the doctor
hoping it will be easily explained.
Well stay optimistic, comforting, and

encouraging and well all get through it. But it
doesnt end there for anyone.
For Graham, it wasnt easily explained. Our family
doctor was reluctant to even speculate and referred
us immediately to a specialist at the Stollery. After
that first meeting, the one specialist became three:
neurology, endocrinology and pediatrics. After a battery
of blood tests, some lasting several hours, and a CT scan
an MRI finally revealed the culprit: hydrocephalus. The
only solution was surgery.
Its maybe the most surreal experience you can have
as you stand in a neurosurgeons office with your child
while the doctor uses a pen to gesture where, in your
childs skull, hes going to drill. I cant say that my mind
has ever managed to wrap itself around that one. I hope
it never does. But this is when the relax, everything will
be fine thoughts started, probably to mask the deeper,
darker thoughts that my life, and the life of my child,
just changed forever.
Graham underwent his first surgery just a few
weeks after the diagnosis. The procedure is called an
endoscopic third ventriculostomy (ETV) wherein the
surgeon creates a channel between the third and fourth
ventricles of the brain because theres an obstruction
or some other blockage in the cerebral aqueduct. The
operation revealed that Graham had an arachnoid
cyst in his brain. The surgeon created several drainage
points in the cyst, and after a night in the hospital my
wife and son were home. Graham was put on monthly
injections of Lupron to help suppress the puberty, and
my family breathed a sigh of relief.
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When the symptoms came back nearly a year later,

we knew Graham was probably headed back to surgery;
we had been warned at the beginning that the ETV
might not work and, given that the first surgery didnt
go exactly as planned anyway, we all braced for the
worst. So 13 months after his first surgery, Graham was
under the drill again.
This time, the procedure was far more aggressive,
and they also installed an EVD (extra-ventricular drain),
a temporary tube from Grahams head to drain and
monitor his brain fluid and to rebalance the pressure
in his brain. There were issues related to the EVD, and
Graham found himself in for a third surgery, this time
to install a cerebral shunt. His second hospital stay
ended up lasting five weeks, during which my wife
never left his side. During these five weeks, I had to
continue working. I felt guilty at first that I couldnt be
there more for my son in addition to working, I had to
look after our daughter. Really, though, I think that was
the best thing I could do; I had to be at home to work
anyway, so I settled into my job as single parent to our
daughter and resupply staff for my wife.
Graham continues to have monthly injections of
Lupron, but many of the symptoms are ongoing.
At times, the effects of both the surgery and the
hydrocephalus on his motor-skills and memory make
him frustrated and upset. I think, maybe, this is the
most important part of the process for parents: of
course parents are going to be there for their kids
during surgeries or hospital stays. Well stay optimistic,
comforting, and encouraging and well all get through
it. But it doesnt end there for anyone. There are always
the memories of the day you realised something was
wrong, or the thought that someone drilled a hole in
your kids head, or the early morning you watched
your child wheel away. And for the child, they have
real, first-hand trauma to deal with, quite often with
life-altering consequences. You can never be too
compassionate, too understanding, or too patient.
Kids can be remarkable pillars of strength, but they
need to know that, however they are and however
theyve changed, you wouldnt change a single
thing you love them and are proud of them exactly
as they are.
TIP: Read about hydrocephalus in detail on page 39,
in Chapter 1: Diagnosis.
The Compass
DADDYS BOY by Trevor Bosma
Oliver was born November 28, 2011, the proudest day

of my life. Not only was I a father but I had a son, who
would be my best buddy. At four months old, Oliver had
the task of taking care of daddy while mommy went
back to work. Little did we know that staying home
with daddy would turn Oliver into a hockey-crazy child.
At seven months old Oliver said hockey for the first
time. At eight months he was introduced to a hockey
stick. At 10 months old Oliver was walking around the
house with a little hockey stick, shooting balls at me. He
walked around everywhere with his hockey stick.
On February 28, 2013 Oliver was diagnosed as a type 1
diabetic, at only 15 months old. This was a shock to
my wife and I, but it explained a lot about how Oliver
was acting the past few months. Illness that took me
two days to get over took Oliver two months. Olivers
weight fluctuated greatly. After his type 1 diagnosis,
Oliver gained back most of his weight and started to
look healthy again. When he turned 18 months old he
slowly stopped walking and regressed back to crawling.
He stopped playing hockey and riding his bike. We took
Oliver to the doctor to check his ears for an infection.
The doctor said his ears were full of fluid and this
was probably why he was having trouble walking. We
had taken Oliver swimming three days in a row and I
accidentally dunked him during a trip down the water
slide. We were sent home with a prescription
for Claritin.
After a month of Oliver taking Claritin he still was
struggling to walk. He was now terrified of heights.
We also noticed that his eyes were starting to cross. He
refused to eat anything and he was constantly banging
his head on the floor. My wife pushed the doctor for
an MRI. We were praying it was not a brain tumour
and I remember always telling my wife to stay positive
and not to think about brain tumours. I was terrified
of the thought of a brain tumour. My grandfather had
survived six major brain surgeries to remove brain
tumours and I saw first-hand how it affected him.
The day of the MRI I took my pregnant wife, due
in two to three weeks with our second child, and my
toddler to the Stollery. Oliver was scheduled for a
30-minute MRI. After nearly 60 minutes we started
worrying about his blood sugar and my wife was
requesting we go in to test him. No one would give us
a straight answer, and they kept saying he would be out
shortly. We explained multiple times that Oliver was a
type 1 diabetic and if he went low in the MRI he would
go into a coma.
Then my wifes cell phone rang. As I am trying
to calm my extremely frustrated pregnant wife her
phone is ringing and ringing. Finally she said Its Dr.
Sukrahni, Olivers pediatrician. As I am sitting in the
waiting room watching my wife talk on the phone I
start thinking to myself, Why is his MRI taking so
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long? What did they find? Then I see my wife collapse

to the floor. I run over and grab her. As my wife is lying
in my arms she is crying uncontrollably and trying
to tell me what is wrong. I finally hear her say, Its a
tumour.
My world stopped. How is this little person, not even
20 months old, already going through more trauma in
his life than most of us will in our entire time on this
earth? We sat in that room begging to see Oliver, my
wife crying, me in complete shock with tears running
down my face and two members of the neurosurgery
team talking to us but I heard no words.
They finally let us see Oliver. I thought I had failed
as a father because I could not protect him. Oliver was
admitted to the ICU and the doctors informed us he
was to have emergency brain surgery in the morning.
As Oliver played and flirted with the nurses, as he is
quite the ladies man, my wife and I spoke with Dr.
Mehta and Wendy. They showed us his MRI results and
his tumour. It was the size of a large Christmas orange
and was located at the back of his head. These questions
were a few of many running through my mind. Dr.
Metha informed us of all the possible complications
and steps to be taken throughout the night and surgery
in the morning. He asked a lot of questions: how does
he eat, how does he sleep, is he happy, do his eyes cross
and is he delayed?
My world stopped. How is this little person,

not even 20 months old, already going
through more trauma in his life then most of
us will in our entire time on this earth?
Everything started to make sense. Oliver was a fussy
baby because he had a tumour pushing on his brain
and brain stem his whole life. He would only eat mush
because he couldnt breathe when he tried to swallow
solids. He took three big breaths and paused for 10-15
seconds as he slept because his airways were blocked
and this caused sleep apnea. He wouldnt walk anymore
and was terrified of heights because the pressure on his
brain made him dizzy. He would go cross-eyed because
of the pressure on his optical nerves. He would cry and
get upset when he got excited to see family and friends
because it put pressure on his head and it gave him
constant terrible headaches.
Dr. Metha sat with us and explained all the possible
complications. We were terrified. There was a one-percent chance of death and a 10-per-cent chance he never
speaks, eats or breathes on his own again. They also
informed us to plan for five to six weeks in the hospital
as the recovery from brain surgery is a long, hard road.
We cried all night, holding Oliver while all three of us
curled up on a single-person hospital bed.
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At seven in the morning, we wheeled Oliver down to

the operating room. Oliver woke up and told my wife
and I he loved us and we gave him hugs and kisses. I
grabbed Dr. Metha, hugged him and said, Please save
my boy. One hour felt like a day, three hours felt like
a month and finally after four hours (which felt like an
eternity) we got good news. They had removed 90 per
cent of the tumour; they only had a piece left on the
brain stem and it needed to be dealt with very carefully.
Wendy told us to expect Oliver to be in surgery for
another four hours. After an hour, Wendy arrived back
upstairs. They got all of it!
I was so proud of Oliver. Then came the news: they
wouldnt know if he could talk, eat, see or walk until
he woke up. My wife and I held Olivers hands all night.
The next day Oliver started to swell up like a balloon.
Still he woke up, and he said, Mommy, daddy.
Day three came and Oliver was in constant pain. Yet
he still tried to crawl out of bed, drink fluids, talk to
us (and his speech improved at lightning speed) and
read books with us. By day four, Oliver was trying to
pull every tube attached to him off and he was pretty
successful. Oliver was now on the road to recovery
and at a pace that shocked even the doctors. We were
moved out of ICU and into a room with three other
children. Oliver would not stay still. He wanted to get
up and play, to read, to watch TV and to eat. I was so
proud of him.
They wouldnt know if he could talk, eat, see

or walk until he woke up. My wife and I held
Olivers hands all night. The next day Oliver
started to swell up like a balloon. Still he
woke up, and he said, Mommy, daddy.
Oliver was quickly known around the ICE unit as
Superman. Olivers recovery time was unbelievable.
Every day we would go for car rides, play foosball in
the playroom and eat at the cafeteria. On day two, in
the pediatric unit, Oliver tried to walk on his own.
He let go of my hand in the playroom and tried to
walk to the toys. I walked behind him with my hands
around his sides waiting for him to fall. Proud is an
understatement, I was so shocked at what he was doing
after only eight days post brain surgery. Each day that
passed Oliver got stronger and stronger.
On August 18, 2013 my wife and I took Oliver for a car
ride. As I held my wifes hand she suddenly squeezed
it. I looked at her and said, Are you okay? She replied,
I was keeping it quiet but they are getting worse. I
am having contractions every five minutes. I told
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Oliver that his sister was coming today and my wife

organized a ride to the Grey Nuns hospital to deliver
our daughter. When my wife left Oliver and I she was
having contractions every three minutes. Oliver was
still at the stage where if my wife or I were not in his
presence, hed lose his mind. So while my wife had our
second child, her mother, sister and best friend took
my place to help her through it. I was hurt I could not
see the birth of my daughter but I knew how strong my
wife was and that she was in good hands. My sister-inlaw sent me videos of my daughter immediately after
her arrival into this world. She also sent me pictures,
texts and I had a quick phone call with my wife. Oliver
had a new baby sister only days after his brain surgery,
and he was so excited. When Oliver went to bed a few
family members took my place beside his bed while
I raced over to the Grey Nuns to meet my daughter
and comfort my wife. My daughter was healthy and
beautiful, and my wife was feeling ready to get back on
her feet and to Olivers side.
On August 25, 2014, only 12 days after major brain
surgery, Oliver was allowed to go home. No one could
believe it! After being told he would most likely be in
the hospital recovering for five to six weeks, we never
dreamed he would be going home two days shy of two
weeks. When Oliver arrived home with my wife, his
new baby sister and me it was like a weight lifted off
his shoulders. Oliver was running around telling us
everything he saw the balloons dropped off for him
and his baby sister, the chocolates left for him, new toys
from friends and family and the new lawn grandpa had
installed with the help of some other family members.
Seeing Oliver so engaged was an amazing feeling. I
guess it was like a weight lifted off of my shoulders
as well. I was so proud that Oliver, aka Superman,
recovered so fast, and proud that my wife was so strong
before, during and after all that happened with Oliver
and the birth of our daughter. And I was so thankful for
our amazing family and friends.
Oliver is walking, running, jumping, talking and
swimming, and everything is taking off at rapid speed.
He surprises us daily with his new words, sentences
and goofball antics. Oliver is still about six months
behind all his friends in his development but in due
time he will catch up to his buddies and we will be there
to encourage him as he develops new skills. I truly do
cherish everyday and live each day as though it is my
last with my family. Life without Oliver would destroy
me and I am so thankful for everything Dr. Metha,
Wendy and all the neurosurgery team did for Oliver and
our family.
The Compass
A FATHERS DREAM by Danny Da Silva
A long time ago I was once a good man. I had done

everything right and was now awaiting the birth of my
second child to complete my family. The birth of my
youngest son was going to be a memory that I would
cherish much the same way as I did my oldest son. The
journey of the second child is one that we sometimes
take for granted especially if all signs point to a normal
journey. Unfortunately, in my case my wifes typical
pregnancy would change in the blink of an eye. My life
took a turn into a world that until now was foreign
to me. Overnight it seemed as though the world that
I knew so well came crashing over top of me and for
a long time I wondered if I could ever get out of the
rubble and find my way again. I was now the father of a
child who had medical complications and a disability.
Learning how to raise a child with a disability is a
difficult process as you have to learn how to understand
the demands and challenges of raising a child with
more complicated needs. This process isnt easy and can
have profound effects on the father. No father wants
his child to be sick, or harmed in any way. It is not an
experience anyone expects to have, but nonetheless I
must have it. Like most fathers, I selfishly dreamed up
a life for my unborn son. I had mapped out all of the
things he was going to do and see even before he was
born. I had lots of dreams. When I was told that my
son was going to have extra obstacles in life and no
one could really tell me what the future would hold for
him, those hopes and dreams I had quickly disappeared
before my eyes. I quickly realized early on in my journey
that I was grieving the loss of the life I thought I was
going to have with my son.
I felt so sad, confused, disheartened and angry that
at times I felt like I was walking a very thin line between
sanity and insanity. I suppressed my emotions, thoughts
and tears. It was the only coping mechanism I had.
At times the anger inside of me was too much for me
to handle and sometimes I lashed out. Right or wrong,
I lashed out. The unfortunate outcome of that is that
I hurt my loved ones, more specifically my wife and two
young children. As a father I was the one responsible
to make sure my son was safe and protected and I was
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angry at the fact that I couldnt do anything about it.

Even though there was nothing that I could have done,
for the longest time I had felt like I had failed him. I had
felt like I was less of a man because I couldnt protect
my family.
I felt so sad, confused, disheartened

and angry that at times I felt like I was
walking a very thin line between sanity
and insanity. I suppressed my emotions,
thoughts, and tears. It was the only
coping mechanism I had.
The highs and lows I faced took me to rough and
dark places. Being a father of a child with a disability I
felt at times overlooked and under-supported. I didnt
know who to talk to. I was already a very guarded
and private person and now I was in crisis mode and
I didnt know who I felt safe sharing my feelings with.
I definitely couldnt share with my wife because she
was also struggling to find the answers. I felt like there
wasnt any emotional support and I was embarrassed
to ask for it. I didnt know who to turn to to talk about
my stresses and the challenges I was facing. None of
my friends and family had experience with this topic so
I felt I needed to keep things bottled in and hope that
no one saw me crack. I had to look strong in front of
my wife and two sons; after all I was supposed to be the
pillar that held the family together.
The birth of my son has made me and the people
around me better people. As time continues to pass,
I am continuously growing and learning to deal with
the difficult challenges that are put in front of us. My
son has opened my eyes. Although he is only four, every
day he is teaching me to be a more compassionate,
empathetic, loving husband and father. In life I thought
the father would teach the son, but in reality it is the
son teaching the father.
A long time ago I was once a good man; now I am a
better man.
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ASHLEY by Dianne Dale
My daughter Ashley was born on January 3, 1993 and it

was the happiest day of my life. She was a healthy baby
girl full of energy. At 14 months she started showing
signs of weakness to her right leg and right arm. Her
left eye was starting to shut and being a new mom I had
no idea what was wrong. Within a week she was unable
to keep food down. We took her to the emergency
department where we were introduced to Dr. Aronyk.
From that moment on he never left Ashleys side. He
ordered an MRI and our world was turned upside
down. The results showed a bleed in Ashleys brain.
Dr. Aronyk performed an emergency surgery not
knowing what he was going to find. He said it could be
a tumour or an aneurysm. He also said that her chances
of survival were less than 25 per cent. The surgery was
12 hours and every second seemed to last for hours.
Our children are true angels; they are

strong, courageous and full of hope and
love. We all can learn from them. I believe
that all things happen for a reason.
I will never forget the moment when the surgery
was complete and Dr. Aronyk said that she made it
and that she did great. He told us it was a cavernous
malformation on the stem of her brain and that she
would need rehabilitation and continuous MRI scans.
Ashley grew into a healthy, beautiful young girl who
was incredibly active. She played soccer, volleyball and
did hip hop dance. All the while, she still continued
MRIs on a regular basis.
When Ashley was 12 years old, she was on a modelling
photo shoot when she complained of her right leg feeling
weak. We also noticed she was dropping things. We did
not think it was anything as she had been doing so well
for so long. We booked an MRI as it had been time for
the next one, and once again our world fell apart.
She was hemorrhaging again. We could not believe
this was happening. She was booked in for her second
surgery and Dr. Aronyk was optimistic. At this time we
were introduced to Wendy, the nurse practitioner of
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neurosurgery. Wendy and Dr. Aronyk never left her side

or ours. Dr. Aronyk told us that we needed to prepare
ourselves that the chances of Ashley being in a coma for
several months. We would deal with anything we had to,
as long as she survived. Once again the surgery was over 12
hours and she made it through. She was awake and looked
at Wendy and said, Hi Wendy! It was a miracle again!
Ashley had to learn how to walk, talk and write
again. Her strength, determination and will to live was
remarkable. She never gave up. She was just at the point
of going back to school full-time and getting back to
her life with her friends when we once again noticed
weakness.
Ashley underwent her third brain surgery, this time
in Calgary because there was no MRI in our operating
room. It was devastating to not be in our hospital, the
Stollery. Dr. Aronyk and Wendy travelled to Calgary
and were by her and our side once again. Dr. Aronyk
said that this surgery would be so aggressive and there
would be so much damage that the chances of her
walking again would be almost zero.
Ashleys surgery was 14 hours long and for the third
time a miracle happened. Nine days after surgery we
were transported to the Stollery in an ambulance and
she recovered there for another two weeks. We went to
the Glenrose Rehabilitation Hospital and Ashley our true
hero and fighter came through again! The doctors were
amazed by the miracle of Ashley starting to walk again.
Ashley is now 21 and continues MRIs and
rehabilitation on her walking. She is working at the
Stollery Childrens Hospital under Dr. Aronyk and
Wendy and wants to do whatever she can to give back
and help children. She participates in volunteer work
and fundraising for the Neurosurgery Kids Fund.
As a mother of a sick child it is so difficult to find the
words to describe the pain. All I wanted to do was take
her pain away. Children should never be sick. When
your child is sick the world outside stops, and nothing
matters but your child.
Our children are true angels; they are strong,
courageous and full of hope and love. We all can learn
from them. I believe that all things happen for a reason.
The Compass
MY INSPIRATIONMY SADIE By Shannon Schmidt

My miracle, my inspiration and my hero entered my life
in a flash all one and a half pounds of her, 16 weeks
early! In some ways it feels like just yesterday, as the
emotions can come back so strong and clear. My third
daughter who was frail, clinging to life and expected to
die overnight would capture my heart, causing me, in a
split second, to become her advocate.
Having almost lost her many times, over countless
procedures and surgeries and a massive brain bleed,
and with her consequent shunt placement behind us,
we thought there was nothing that could be worse. It
was then that we were dealt another blow. I was alone,
rocking her in the NICU when I was told that our
precious girl was deaf. It was a blow that I can still feel
to the core of me.
I was somewhere in the cycle of grief about her early
arrival and the serious impact it had on her brain and
future development, so when the audiologist told me
my baby had not heard me sing to her, talk to her, and
pray for her for over 180 days in the hospital, I spun
back straight to denial. It took time and patience, the
support of my husband and daughters, and I soon
came back up for air and began treading water again.
Although the medical world gave us a very gloomy
prognosis, with the worst case scenario, we fought on
with hope, prayer and faith. Our lives were changed
forever the day Sadie was born, and so were the lives of
our first two children. We didnt know the struggles we
would face in days, weeks and months ahead. Living
two lives, one in the NICU with my baby and one at
home with my two other children, lasted six months.
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It was the most difficult time in our lives. Looking

back I have no idea how we did it. It is all a blur. But
we put one foot in front of the other and made life
work the best way we knew how. We could have never
imagined how much this teeny helpless micro-preemie
would teach us and change us for the better!
Six years later, looking back I see this as a beautiful
journey. It is never easy; in fact, it is hard a lot of
the time. I dont like that my older two girls get the
leftovers of me a lot of the time. I dont like that Sadie
experiences pain, hospitalization, fear, surgery and a
childhood full of appointments instead of playdates.
I dont like that we have to make decisions that other
families dont have to make.
Looking back I have no idea how we did it.

It is all a blur. But we put one foot in front
of the other and made life work the best
way we knew how.
But I love how far weve come. I love how much weve
grown as a family. I love how much weve grown in
our faith; I love the compassion that exudes from my
family because of what our miraculous girl has taught
us. I love that weve met people wed never have met
if our life was normal. I love that I get to celebrate
milestones that other people take for granted. I love
that I get to be these three kids Mom, and I wouldnt
change any of them for the world!
129
I SEE YOU by Ellen Stumbo
Having a child with a disability can be difficult.

There are moments you wonder if anyone will ever
understand or get what it is like to walk in your shoes.
You parent a child with special needs and sometimes
you feel alone and invisible.
But you are not. Today, I want to tell you that I see you.
I see you in the middle of the day, tired. Your hair
pulled back in a ponytail and a stain on your shirt. You
sacrifice so much for your child. You are beautiful.
I see you at the ballpark, cheering and encouraging
the kids playing in the Little League. Yet, I know while
you cheer your heart aches, wishing that your son could
play ball too, not in a special league, but here, running
and moving his body like those kids rather than
spending his days in a wheelchair. You are courageous.
I see you at the therapy office programming your
childs speech device, entering phrases and words to
help her communicate with others. You lean over to
your spouse with a grin and push a button, I hear the
computers voice say, I farted. You are funny.
I see you in the middle of the day, tired.

Your hair pulled back in a ponytail and a
stain on your shirt. You sacrifice so much
for your child. You are beautiful.
I see you at the support group. New parents are
visiting with their baby. They seem scared, nervous, and
they are trying to deal with the diagnosis. You approach
them, ask questions, affirm their feelings, and assure
them it wont always be easy, but it will be good. You are
compassionate.
I see you walking into the school for the third time
this school year, with a binder full of notes, lists, and
goals. You dont feel your childs team is following the
IEP, and you wont give up inclusion for your child. You
will do whatever it takes to provide the services that
your child needs. You are resilient.
130
I see you at the hospital, a place you are too familiar

with. Tubes, machines, tests, and specialists. Your
childs feeding tube is the least of your concerns. You
are brave.
I see you at the restaurant, with a menu in your hand.
But the noise is too much for your child, the smells and
unfamiliarity overwhelm him. Soon, he is yelling and
screaming. While people stare, you exit the place and
get into your car as quickly as you can. You are flexible.
I see you at church asking one of the new moms if
you can bring her a meal on Tuesday afternoon. You
have so much on your plate, but you also remember
how hard the first few weeks are after a baby comes
home. You are generous.
I see you at social gatherings where well meaning
people ask ignorant questions about your child or their
disability. They make hurtful comments, or fail to
recognize that your child is a child first. You dont get
angry, you dont yell. Instead, you smile, answer their
questions politely, and you educate them in a gentle
manner and thank them for their concerns. You are
gracious.
I see you out there in the world, living a selfless life.
You give so much, you feel so deeply, and you love so
abundantly. You are admirable.
These qualities you display are precious gifts you give
to your child and to those around you, they dont go
unnoticedI see you.
Ellen Stumbo writes about finding beauty in brokenness with
gritty honesty and openness. Shes passionate about sharing
the real sometimes beautiful and sometimes ugly aspects
of faith, parenting, special needs, and adoption. Ellens writing
has appeared on Focus on the Family, LifeWay, MomSense,
Not Alone, Mamapedia and the Huffington Post. She blogs at
ellenstumbo.com Reprinted with permission of writer.
The Compass
Sibling support information and stories

When a family is dealing with a serious medical issue for one of its members, it takes a tremendous toll on the whole
family and siblings are no exception.
Being aware of the confusion and stress that the healthy
children in your family might be feeling is important.
This section is designed to give you an idea of some
of the emotions your other children might have and to
also share with you the stories of a few siblings.
We asked a few parents about how their other
children felt and these were the more common
responses:
Confused
Worried that they will get sick also
Worried that their sick sibling will die
Guilty because theyre healthy
Resentful because the ill child gets more attention
Sad because they miss their parents/siblings
Nostalgic for the way they were before
Anxious of being away from parents
We asked for a few ideas to help siblings deal with the
illness in the family:
Seek support group for your child. We have included
a few sibling support groups that we found below.
Ask around or do an online search to see if others
are available in your area.
Keep communication open by encouraging siblings
to talk. Having quiet time with your healthy child
might help them open up.
Try to maintain as normal a schedule as possible.

Giving your children advanced notice might help
them deal better with the events taking place. For
example, put a calendar on your fridge and write
in or draw pictures of events that you know are
coming up. Discuss these in simple terms that your
child will understand and do it often. An example
for smaller kids is, In two days, mommy and
brother Billy will be going into the hospital. You
will sleep at your uncles house for two sleeps then
mommy will be back on Friday.
Spend some alone time with your healthy child.
Be patient. This is so hard when you are emotionally
and physically exhausted. But know the little ones
are hurting too.
Include siblings in treatment and care such as
getting a warm blanket for their sick sibling and
letting them help tuck them in. Have them create a
card for their sibling and place it at the bedside.
Inform your childs teacher about the current
situation. This might be another way for them to
get support.
Include children in fundraising or activities to give
back to the community.
NEUROSURGERY KIDS FUND

Super Sibling Days are special events hosted by the
Neurosurgery Kids Fund where siblings are celebrated
for being amazing brothers and sisters to their medical
siblings. Each event will be unique and guaranteed to
be fun.
Follow us on facebook or neurosurgerykids.com for
more information.
Sibshops
The City of Edmonton hosts workshops for siblings
of children with mental, physical or developmental
special needs. The workshops provide the
opportunity for peer support and education for the
sibling while being fun and recreational based.
There are a variety of sessions for different age
groups. Visit edmonton.ca and search for Sibshops
or call 311 for assistance.
Kids with Cancer Sibling Support
Kids with Cancer offers workshops that are focused
on helping brothers and sisters deal with the illness
in the family and the stressors that surround it.
The Compass
Each session includes group and individuals

activities.
For more details visit kidswithcancer.ca.
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Sibling Support Information and Stories
MY BIG SISTER by Jake Beaudoin
Jake, can you tell us a bit about your sister Olivia?

My sister has a shunt. She is afraid of needles. She hates
oranges. Sunday, Monday and Tuesday she had to go to
the hospital. I was sad because I miss her. Sometimes
they hurt her in the hospital. She is brave sometimes.
She is so big when she is brave. I hate it when she is
in the hospital. I miss my mom and dad. They are sad
sometimes. I stay with my iniina (god mother-nanny).

I want the doctors to make her better. I also want ice
cream. Im always waiting for them to get home. I love
my sister.
*Jakes big sister has undergone 31 brain and spinal
surgeries. She is 10 years old.
MY LITTLE BROTHER by Jacob DaSilva

When my little brother went away to therapy for
seven weeks, I drew him this picture and put it on my
bedroom door.
I love my brother and I miss him when we are not
together.
THE BIG BROTHER by Sam*
My name is Sam. My little brother Declan had cancer.

He had tumours in his spine. He is always sick. He is
at the hospital lots and my mom always has to stay
with him. I wish she could stay at home but if I was
at the hospital I would want her there so I guess my
brother wants her there too. I hate when they stay
at the hospital. I miss my mom and brother. Its
different when they are not home. My brother had
surgery on his back two times to take the cancer out.
My mom says I am allowed to be mad

and sad sometimes but that God picked
us to be his family and me to be his big
brother because he knew I would be
perfect, and I could watch out for him
and help him when he needs help, so I do.
The cancer would not go away so they radiated him on
his spine. It made me sad cause it made my brother really
sick. His cancer is finally gone. I am happy because my
brother got to come home and live with us now.
My brother had friends who died of cancer. My mom
132
and dad told me my brother was not going to die.

I knew they were right. The nurses and doctors are
really nice to my brother. He likes them. He pretends
to be a doctor all the time and my little sister is always
his nurse.
My brother sometimes wears a cast on his hand because
he had to have his finger amputated because he had lots of
infections in his bone and he broke his arm too.
My brother is trying to walk. He works very hard and
has lots of equipment to help him. My mom says one
day he will walk but he might just have to use a walker.
I wish he could skate and play hockey with me. He
crawls everywhere. He pretends to skate on his hands.
That is how we play hockey in our house. We always
have fun playing. Sometimes I get mad cause we do not
do all the stuff my friends get to do with their brothers
and sisters. My mom says I am allowed to be mad and
sad sometimes but that God picked us to be his family
and me to be his big brother because he knew I would
be perfect, and I could watch out for him and help him
when he needs help, so I do.
Everyone tells me I am an awesome big brother.
*Name withheld
The Compass
Sibling Support Information and Stories
MY AMAZING SISTER by Ella Schmidt
My little sister is truly a miracle. Her name is Sadie. I

am five years older than her. She was born as a preemie
(which means she was born way too early). She was
cute, loveable and small. I knew right from the start
that she would be my sister no matter what happened.
All you need is love! The doctors said that she would
not speak, hear, walk or see. They were wrong. She
can see and speak and run, but she cant hear. She has a
hundred thousand dollars of equipment that helps her
hear. Sadie almost died lots of times. She has a shunt in
her brain to help her live. I wonder how that feels? In
six years she has had more than 12 surgeries. We prayed
and prayed.
MY ANGEL MY SISTER by Denean Dale
My sister Ashley had her first brain surgery when she

was a baby. At this time I did not know her. When my
dad met my stepmother Dianne, I knew about Ashley
and her brain surgery when she was a baby but we
all thought we wouldnt have to deal with her going
through that tragedy again. Ashley was a six-year-old
little girl who loved playing games, having teddy bears
and hanging with her new big sister. Ash and I always
had so much fun together. No matter what we were
doing we would have a blast doing it. As the years went
by we became closer and closer. Six years and many
family vacations and fun times had passed by so quickly.
Ash was 12 years old when we found out her brain
had hemorrhaged and she would need surgery again.
This was traumatic to my family and me. We all were in
such shock that this was happening to this fun-loving
little girl who deserved so much more than to spend
her days in a hospital when she should be out playing
and having fun. I had a sense of hope that Ashley would
make it because her strength was much more than the
hemorrhage in her brain. She survived that and had
the strength and determination to get better and not
only did she have to deal with brain surgery, she had
to relearn how to walk and talk. It was only a short
eight months later that she had to undergo her third
surgery because her brain hemorrhaged once again. At
this point in my life I had got into makeup school and
was half way through when I got the news I just broke
down. I couldnt handle the stress again and having to
be strong for my family and Ash. So I dropped out and
quit my job to be there for my family.
I remember trying to talk to Ash on the phone when
she got out of surgery and although no words were
The Compass
Sadie is really fun. She loves to play store; it is her

favourite game. She loves it, and when I say love, I mean
LOVE! She loves to play with the money she calls it
moneys. If she finds it, you wont get it back. Sadie likes
popcorn she calls it cupcorn. Sadie is my wake-up call
on school days. She will come in and say good morning
and jump on me.
Nobody knows how much I love her. I love her and I
wont like it if she meets up with a bully. She goes to the
same school as me now. I am proud of her. I will help her
on the bus and at school. I am thankful for Sadie and that
God has brought her through all of this so that we can play
together. Sadie is very fun to play with and I love her.
making sense, you could tell that she was happy to hear
and talk to me. Ashley was 13 at this time and had to
once again relearn how to walk and talk. This whole
time my heart was broken for her. I just wanted to see
her running outside and playing like a normal 13-yearold teenager. There was a fire in Ash, and a strong
desire to recover. Her will to live was much more than
all of us and the doctors could imagine. Ashley taught
me a huge lesson in life never give up on your dreams
and goals. Life is so short and it can be taken from you
in an instant. I am so thankful to have her in my life.
Ashley inspires me to be a better person and
appreciate the things in life that you normally wouldnt
think twice about. She continues to push herself and
do things that people told her she wouldnt be able to.
Ash always tells me to never give up on my dreams and
I have finally applied to one of the most prestigious
makeup schools in the world and have been accepted.
Ashley taught me a huge lesson in life

never give up on your dreams and goals.
Life is so short and it can be taken from
you in an instant. I am so thankful to
have her in my life.
If I didnt have the strength and support of my sister I
would have never accomplished this. She truly changed
my life and although it is unfortunate that she had to
go through all the pain and suffering, she came out and
showed the world beauty. Ashley gives young kids a
reason to live and confidence that they will survive. My
sister Ashley is my angel.
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If you are a friend, family, or health care provider, it is not always easy to know what to do or say to parents when
they are going through a medical crisis or loss of a child. This section will offer a few ideas on how to be a supportive
individual during this challenging time.
ILL ALWAYS BE HERE by Emelie Marie Diez
I cannot ease your aching heart,

Nor take your pain away;
But let me stay and take your hand
And walk with you today.
Im here and I will stand by you,

On each hill you have to climb;
So take my hand, lets face the world...
And live just one day at a time.
Ill listen when you need to talk,

Ill wipe away your tears;
Ill share your worries when they come,
Ill help you face your fears.
Youre not alone, for Im still here,

Ill go that extra mile;
And when your grief is easier,
Ill help you learn to smile.
WHAT CAN I DO TO HELP?
This can be a difficult question to answer when all of

your energy is going into caring for your sick child, or
worse yet, grieving their loss. It can be difficult to think
of how to meet your basic needs or the needs of other
members of your family when you are struggling just to
breathe. We hope that this list makes it a little easier for
those friends and family to decide in which way to offer
their help during your time of need.
This is a compilation of suggestions from families with
a child who was given a major life-altering diagnosis, a
child who has spent a significant amount of time in the
hospital or who has had a child die.
If you truly want to help, dont just offer pick one
of these to do from the list below. The family will be so
truly appreciative of whatever you choose.
Add a meal or two to their freezer.
Offer to drop off food at the hospital at meal times including disposable plates, cutlery and dishes that
you do not expect back. Respect the fact that the
family may not be up to visitors, but it does not mean
that they are not appreciative.
Bring fruit! Fruit baskets, fruit arrangements, fruit
salads. It is nice to have something healthy that does
not need to be heated up.
Help to organize meals for the first 30 days
mealtrain.com is a great resource. Put out a cooler
at the home so that people dropping off meals have
somewhere to put them in case the family is busy or
not at home right then.
If there are other children involved, try to help out
in a way that is natural for you. Often parents are
consumed with the sick child or the loss of their child
and knowing that their other children are being cared
for and are having fun helps them feel less guilty.
Some ideas: play, read books, do lego, offer to pick
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them up and take them on an outing somewhere

swimming, the park, etc.
Drop off baked goods.
If you would like to send flowers, choose ones that
are easy to care for and require little maintenance.
Better yet, have fresh flowers and a kind note waiting
for them at home. Balloons are a good alternative for
in hospital because of allergies.
Bring a piece of home to the hospital offer to
pick up anything that they may need and bring
it to the hospital. This might include a favourite
pillow/blanket/stuffie, clothes, personal items or
medications.
Arrange for someone to come to the hospital to give
the parent a neck and scalp massage.
Help out around their house send them a few
dates where you are available, and show up to clean,
do laundry, vacuum, dust or just tidy up. If they
are living in the hospital, just go over and clean
everything.
Put a tea basket together. Maybe add some chocolate.
Run errands for them.
Help with yard work like mowing the lawn, pulling
weeds or raking leaves.
Bring them a beautiful journal to capture their
overwhelming emotions and thoughts.
Offer to bring breakfast.
Dont be afraid to be curious and to ask and learn
about the illness. It shows you care.
Offer to help set up a blog for them if they enjoy
writing and would find it therapeutic.
Get a group of friends together and work on a
project. Build a fence, for example, or fix a deck.
Make something for their child using your talents
that is specific to their condition if their child has
The Compass
Stories from Family and Friends
hydrocephalus, for example, crochet the child a

special toque to fit their head. If they have sensory
issues make a weighted blanket.
Offer a listening ear.
Offer to take the parent out to a nearby restaurant or
to take them for a pedicure to a nearby spa. Ensure
that they explain to the spa that the parents child is
in the hospital and they may need to cancel without
giving adequate notice.
Bring something special just for the siblings. The sick
child tends to get a lot of gifts so it is nice to surprise
the other children with something special also.
For the family whose child has died:
Do any of the above.
Do not be afraid to talk about their child.
Acknowledge their child by name and reminisce
about them with the family. Parents love talking
about their children whether they are here or not.
WHAT DO YOU SAY?
Here are a few comments that families have shared with

us that they found supportive and ones that were not.
The truth is there are no rules of what to say. There are,
however, definitely some things that are more comforting.
Supportive things to say:
I am so sorry for the illness of your child.
I wish I had the right words. Just know I care.
I dont know how you feel, but I am here to help.
You and your loved one will be in my thoughts and
prayers.
I am always just a phone call away.
We all need help at times like this. I am here for you.
I am usually up early or late, if you need anything.
How is your spouse, other children, or grandparents
doing?
It is so nice to see you. (Instead of how are you?
Only ask that if you want to hear an honest answer.)
Supportive comments focused on the loss of a child:
Tell me about (Name)s last day.
I remember this about (Name).
I am so sorry for your loss.
My favourite memory of (Name) is.
Ask what happened and listen to the whole story
with attentiveness.
I am sorry that your child couldnt stay here on
earth with you longer.
The Compass
Do something to acknowledge each anniversary date

one month, two months, three months, six months,
one year, two years, etc. Even just a handwritten note
using the childs name is perfect.
Do something to honour their child, like tree/
flower planting, a star donation, a donation to their
charity of choice in their childs name, a painting, or
memorial jewelry.
If you are talented, write a poem or make a beautiful
scrapbook of their child or cards that were given to
the family at the memorial/funeral.
Be there for six months, one year, five years or 10
years down the road. Grieving the loss of your child is
a lifelong journey.
A little spark of kindness can put a colossal burst of

sunshine into someones day Unknown
Remember:
Ask something about the child every time you see
their parent.
Realize that parents love talking about the child
and even if they cry, that is OK. No one can ever
make them more sad about her; that has already
happened.
Ask to see photos of the child.
TIP: More information on bereavement can be found
further along in this section.
Unsupportive things you want to avoid saying:
God only gives you things you can handle.
It will make you a better person.
I know what you are going through. (Dont say this
unless you do.)
Special kids are for special parents.
I dont know how you do it.
Tomorrow is another day.
Everything happens for a reason.
Unsupportive comments after losing a child
Comparing their loss to the loss of a pet.
That its Gods will, or that its for the best.
He/Shes in a better place
Do you think you are depressed?
Are you better now/yet?
Are you over it?
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FROM THE OUTSIDE LOOKING IN by Carla Rodych

I knew deep down in my heart my nephew was going to
fight. I also knew his parents would find the very best
possibilities for him.
My presence was there right from the beginning, the
evening he took his first breath into this unfair world.
I left that hospital minutes after I saw a beautiful
healthy baby boy. The next morning I woke up excited
and called to see how our new baby boy was doing. It
took several tries but I finally reached the new daddy,
but something was wrong in his voice. I was forceful,
and finally with a crack in his voice he managed to
whisper, They found something. He didnt have the
courage to continue. I immediately left and raced to
the hospital. I did not care if they wanted me there, I
needed to be there. I loved this little boy too.
A few hours after my nephew was born, his mommy
and daddy received frightening news with horrible
statistics and they began their journey into the
unknown. I watched as they explored every aspect of
his prognosis, the ifs, ands and buts of a very sick baby.
I knew I couldnt change anything, or say anything to
make them feel better.
I decided right from the start I would be a part of
their support network. I have learned that the best you

can do is be available. Call frequently; if they pick up
and spend even just a couple minutes with you, its a
very good sign. If they dont answer thats a bad sign.
I decided right from the start I would be a

part of their support network. I have learned
that the best you can do is be available.
Let them cry. I realized after spending many hours on
the phone with my nephews mother that sometimes
she just needed to cry and have someone genuinely
listen. Dont be afraid to cry too. If you had said call me
if you need my help and they actually find the energy
to ask for help be true to your word and drop what
youre doing and help immediately. Your job as
an outsider is to keep mommy and daddy as healthy
as possible so they can fight for their baby. Most days
are hard, but eventually hope pours in and then they
truly believe that nothing will stop them; you just
need to make sure they are patient and strong enough
to get there.
OUR GRANDDAUGHTER OLIVIA by Judy and Doug Mercer

Our journey as the grandparents of a child requiring a
lot of medical attention started when Olivia was born 12
weeks premature. She spent the first two months of her
life in the NICU at the Royal Alexandra Hospital. At the
age of 11 days she suffered a bleed in the ventricle of her
brain. As a result she is hydrocephalic and has two shunts.
Right from the beginning our role as a family and
as Olivias grandparents has been to love and support
our granddaughter. When Olivia is in the hospital our
daughter stays with her. Its very important for us as
her grandparents to be at the hospital for all surgeries
and serious procedures. It offers both physical and
emotional support to Olivia and her parents
It has been and will be a roller coaster of highs and
lows, worry and elation, stress and joy and many other
emotions when dealing with various procedures weve
seen our granddaughter go through. The hardest part
is seeing her so very sick, and not being able to do
anything to take away the pain or make her feel better.
Your heart will ache and your emotions will surface.
When that happens we find it best to leave the room
for a few minutes to compose ourselves. Olivia is sick
enough and she and her parents dont need to have
added stress by seeing us upset. There have been many
136
sleepless nights. The best philosophy we have learned

to live by is this too will pass. When things get tough
theres only one way to go and thats up. We have
faith that one way or another that things would work
themselves out and get better. So far that has definitely
been the case.
We feel another very important role is for us to
help make life for the other two children as normal as
possible during Olivias hospital stays. Knowing the
other children are taken care of takes worry and stress
off of Olivias parents. We have the children stay at our
place or we stay with them in their own home, make
sure they get to school, that homework is done, and
they get the attention they deserve. We take them up
to the hospital to visit their sister and parents every
day if at all possible. Taking a home-cooked meal to the
hospital for our daughter also helps.
Olivia is a normal, spunky, incredibly strong 10-yearold child and is treated as such. Even though medically
she has been through a great deal in her life, she
remains a happy, intelligent, compassionate and loving
little girl. We are incredibly proud of her and marvel at
her outlook on life.
The Compass
OUR GRANDSON JOSHUA by Nana and Grandpa Hage

The most important people in our lives are our
children and grandchildren. When an unexpected
life-threatening experience occurs to a grandchild,
grandparents feel the pain and anguish twofold, deep
in our hearts. We suffer for both our child and our
grandchild.
In August 2010 our daughter gave birth to our
beautiful grandson, Joshua. Before his birth, he suffered
devastating complications, placing both our daughters
and our grandsons lives in danger. The doctors told us
had she not gone to the hospital when she did, Joshua
would have died that night and our daughter could
have died as well. In that moment we could have lost

two of our family members.
Our grandson suffered a stroke at birth caused by
a life-threatening blood disorder. The effects of the
birth complications have been felt many months later
eventually delivering to all of us the greatest challenges
we have faced thus far in our family.
As we look back over the past three and a half years,
we have witnessed the power of commitment, faith and
love. In spite of the setbacks we all have found courage,
hope and vitality to keep life moving forward in a
positive direction.
A GRANDMAS PRAYER by Betty Killebrew

God send an angel to stand beside
My little grandchilds bed;
Please help him to get better
And relieve our fear and dread.
So keep him safe and help him heal

and let him once more thrive,
and I will praise and thank you
As long as Im alive.
His days on earth have not been long;

But in just that little space,
Every heart has come to have
For him a special place.
INSPIRED BY STRENGTH A FRIENDS PERSPECTIVE by Nicole Sabo

I was one of the first people she told when she found
out she was pregnant with their first child. I remember
her enjoying every minute of her pregnancy, never
having morning sickness and always having rosy cheeks
and the glow that people talk about. It was a joy to
watch her throughout both pregnancies.
When their first daughter was born, she was
beautiful, with porcelain skin and big blue eyes. Over
the last few years, Ive watched her grow into the
sweet-natured, smiling young girl who has the most
exuberant laughter.
Then, almost two years ago came their sweet
second daughter, with gorgeous red, curly hair and a
fiery temper to match. She is so observant and I love
watching her watch everything else in the world.
Its amazing to see her expressions when seeing new
things.
Its been a long, hard road for the entire family and
weve had many conversations and shared tears over
The Compass
the battles that both girls have faced and are going to
face throughout their lives. But Ive always been in awe
over how this couple always saw the light at the end of
the tunnel. Instead of looking at what could be or what
could happen, they embrace each challenge and have
always had the best attitude about how they can help
their girls now and what they can do to give their girls
the best possible outcome and best future possible.
Ive always been in awe over how

this couple always saw the light at
the end of the tunnel.
I see how many obstacles both girls have already
overcome and I am reminded each day of how lucky
I am to be a part of their lives. To watch them both
grow stronger and get past each little (or big) hurdle
is always a reason to celebrate.
137
A LETTER TO SANTA
The true meaning of friendship and Christmas is
captured in a note to Santa from eight-year-old Grace
Metcalfe.
A VERY BRAVE LITTLE BOY by Martha Careiro
In August, when we received the call that a new little

member of our family had come into the world,
we were oblivious to what was about to happen. I
remember sitting next to my very ill 87-year-old mother
when my nephew told me the baby was very ill and
could possibly die.
I prayed and asked God to do what he thought was
best for both of them.
We buried my mother four days later, and 28 months
later, our big boy is thriving. He is a child with so much
life in his little body and so much drive. He is making
great progress and rarely do we see him give up. He is
such a happy little boy, and he probably has no idea
what is happening.
He has so much to give and we are elated that he is

doing so well. We have learned so much by watching
him and his parents. It is hard to watch him struggle
at times, and I know that it is selfish to be thinking
of our feelings at this time and not his. He is such
an inspiration for us. Its easy for us to say, I can
only imagine what it must be like, but there is no
imagination that can prepare you for what it is like for
those children and their parents. It is a difficult journey
and you truly cant understand unless you are walking
in their shoes.
He is a champion and we love him and are so proud.
One day he will walk tall. He is a hero to us.
MY PATIENTS, MY HEROES A NURSES STORY by Stacey Hall

My name is Stacey and Ive been a pediatric nurse at the
Stollery Childrens Hospital for four years. In that time,
I have seen countless moments of joy, pain, weakness
and strength in patients and parents while they learn to
cope with a disease or diagnosis they have just received.
In being a nurse to patients who have undergone brain
or spinal cord surgery, I have witnessed miraculous
moments shared with patients and their parents, and I
have comforted others who were still hoping for a miracle.
When a parent is told their child has a tumour or a
stroke, or has developed a life-threatening illness or
needs emergency surgery, their entire universe stops
moving. It is the responsibility of the health care team
to address, explain, inform and teach the patient
and their family everything they can to aid in the
frightening journey that lies ahead. In some instances,
138
the journey is brief, manageable and may become a

distant memory. For others, the disease or diagnosis
may change the lives of each family member, testing
their strength and spirit and requiring an army of
support and hope.
As a nurse, I generally witness only a fraction of this
journey while the patient is hospitalized, treated and
released. Some of the patients or families I will never
see again, while others return and their difficult journey
continues.
Volunteering as a camp counsellor at the Pediatric
Neurosurgery Summer Camps, Ive had the opportunity
to reconnect with these patients, watching them thrive
with kids who have been through the same struggles,
some that they conquer while other struggles continue.
All of them are heroes in my eyes.
The Compass
THE CHOICE by Julie Gunderson
I was there when my sisters water broke when she was

pregnant with Olivia. We were camping in Nordegg
at a remote site and Brett was off fishing. I was there
when the doctors told Wendy and Brett that Olivia had
a brain bleed and would need surgery. I was there when
they found out Olivia needed a shunt and would likely
need it the rest of her life. I was there when everything
seemed so normal and Olivia was growing up like all
other kids becoming a little independent person and
big sister. I was there when Wendy phoned me to tell
me something was very wrong with Olivia at age nine,
and that they were taking out part of her skull. From
Calgary, I drove up to Edmonton with my kids to make
sure she knew I would always be there. I was there
when Olivia was so sick during the Christmas of 2012,
I changed our usual Christmas plans to make sure my
family, my husband and kids could be there too.
My husband has taken to coming with me at these
critical moments. We were there two weeks ago when
Olivia began her current battle with her illness. As we
drove to get something at a local store, my sister told
me that it would be strange for her to go through this
without me. I dont think I realized that being there
meant so much to her as I know she would have moved
mountains for me if the tables were turned. I have often
taken on the role of director when I could not be there
for Wendy and Brett in person, telling my Mom what
she needed to do, and instructing my Dad on when to
talk and when to listen. I was there when Wendy and
Brett needed me and I will always be there for them.
There is no other choice.
Choice is a funny thing. Wendy and Brett did not
choose for Olivia to be a sick kid the situation chose
them. Instead of allowing the situation to totally define
their family, Wendy and Brett chose to change the
world with the Neurosurgery Kids Fund. They chose
to allow their friends and family to be a part of this
transformation, for which I am very grateful. They
STANDING UP FOR LOVE by Arianne Piojo
Although I am not able to comprehend what it is like

to be in any of your shoes, I want you all to know that
each one of you inspires me, and that each of your kids
is so special to me.
Whether I have had them as a patient, had the chance
to meet them at Camp Everest or a Neurosurgery Kids
Fund event, or have heard their story, your child has
taught me true courage, bravery, strength, grace and
patience. Their ability to smile right after having an IV or
some painful procedure is mind-boggling to me. Their
selflessness to ask, How are you? or Are you ok? Why
The Compass
chose to share Olivias story with the world in hopes

it helps someone else. They chose hope, which makes
me incredibly proud of them both. It is when I look
at their choice to hope for more for Olivia and their
family that I realize there is no room in my head for
selfish thoughts about how Olivias illness has affected
my normal life. I now choose to look forward to the day
when Olivia runs in the backyard with my kids like she
did just a few short years ago.
With all the anger, helplessness, worry

and guilt this unexpected choice has
brought, it also brought joy.
With all the anger, helplessness, worry and guilt
this unexpected choice has brought, it also brought
joy. Without Olivia, there would be no Camp Everest
where an awkward engineer like me learns the pure joy
of playing with medical kids. (I have to admit, by the
first year, I thought engineering a pipeline wouldve
been easier.) Olivia has allowed me to develop the
Hope Stones program, which brings me endless joy. Not
only do I get to count the beads with my six-year-old
daughter, I get the notes of thanks from parents who
tell me how their child has strung the beads together
and the joy this has brought their family. It has allowed
me to celebrate the joy of Olivias good days and weeks
and months with Wendy and Brett, those days when
she is a stubborn, attitude-filled 10-year-old child. I am
sure there will be more of these days in our near future.
A chronically ill child affects all members of a family,
both immediate and extended. I have learned that this
comes with a range of emotions and thoughts some
good and some bad. But most of all it comes with
deciding if you are in for the long haul, and if you are,
choosing to always be there for support in both times of
worry and times of joy.
are you crying? right after they wake up from a major

surgery makes me wonder whos taking care of whom.
Their carefree nature of walking to the beach (the
beach inside the Stollery, that is) with lines attached
to them and an IV pole on each side is crazy to me and
makes me smile now as I picture it. Their ability to
show love either by holding your hand or giving you
some cuddles when their head is pounding so much
they can barely breathe is truly inspiring. I believe that
all of these things mostly come from having amazing
parents like you.
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Whether the death of a child was sudden or if it came after a long illness or injury, it is a tremendously
difficult situation to deal with.
Due to the complexity of neurosurgical conditions, death is a devastating reality that we need to address.
This section offers helpful suggestions and resources, words of wisdom and stories.
This section was written by Melinda Elgot and Trina McCartney in loving memory of Naomi and Katelyn
and is dedicated to all the beautiful angels of pediatric neurosurgery.
PREPARING FOR LAST HOURS WITH CHILD HOSPITAL DEATH

A Parents Perspective
Each moment spent with a dying child is truly sacred.
Stare at the beautiful features of their delicate face,
tracing it endlessly with the stroke of a finger, getting
lost in the smell of their hair and skin, feeling their
gentle beat of their heart and their breath on your
cheek.
The following list can be used by families and/or
health care professionals in creating a peaceful and
sacred space for families with a dying child.
Contact palliative care
Contact hospital photographer, Now I Lay Me
Down to Sleep
Arrange for hospital chaplin at the request of family
Request a nurse with whom your family has a
relationship
A nurse may be able to provide funeral home options
Have a family member or friend who will act as a
primary contact responsible for:
- contacting those to be in attendance at hospital
- bringing anything special for the child to the hospital
(christening gown, special toy, clothing, etc.)
- contacting the religious representative of
their choice
- contacting the funeral home
- contacting the photographer of their choice
Arrange for private room if available:
- request a pull-out double hide-a-bed and a few
chairs
- pull out and make a bed, including blankets and pillow
- place Stollery bears on bed
- place and turn on a star machine in the room
BOOKS ABOUT GRIEF
There are a wide variety of books available on the

market for families when dealing with the topic of
grief. We approached a few of the families in our
neurosurgical community and asked them to share a
few they found helpful.
Grief for a Season, by Mildred Tengom. This book
guides those who are grieving at their own pace.
It is a faith-based book, with many quotes from
scriptures and hymns.
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- ensure there are boxes of good tissue in room

- ensure there is a CD player with music playing
- have soft lighting (lamps) in room
- set out quiet activities colouring books, crayons,
playdough for siblings/children in attendance
(possibly have bags pre-made)
Arrange for separate space for extended family and
friends
Ensure privacy is available when requested or needed
Limit monitoring to essentials (turn off beeping
monitors)
Provide warm blankets for the child
Provide water for the child and their family
After the child has passed:

Allow time for the family to be alone holding their
child for as long as appropriate
Assist parents in bathing and or dressing child
Take footprint/handprint impressions (moulds) and
ink fingerprint/handprint/footprint
Provide clothing for burial/cremation if parents
have nothing. Ask parents if they would like
clothing back or to be buried/cremated with child.
Make note of this on funeral home documentation.
Ask if they would like to leave anything else to be
buried with child
Give memorial jewelry info (Silver Soul)
Ensure family has all of their childs personal
belonging including hope stones, name tags, cards,
gifts with them when they leave
Arrange for a porter to help with familys
personal items
When the Bough Breaks, by Judith Bernstein.

When Bad Things Happen to Good People,
by Rabbi Harold Kushner
The Tunnel and The Light, by Elizabeth KublerRoss. This book is compiled from the many lectures
given by Kubler-Ross.
In Lieu of Flowers, a Conversation for the Living,
by Nancy Cobb.
Mans Search For Meaning, by Viktor E. Frankl.
The Compass
Stories of Bereavement
This tells how Viktor Frankl endured years of

unspeakable horror in Nazi death camps and how
he created his theory of mans search for meaning
under horrible circumstances.
Cleo, the Cat Who Mended a Family, by Helen
Brown. This is a true story of a mothers grief.
Along with the very sad and tragic moments in this
book, there are some humourous moments as well.
HELPFUL WEBSITES
There are countless resources to help with grieving.

Here are a few suggestions:
Photography:
Now I Lay Me Down to Sleep
nowilaymedowntosleep.org
A quote from the this organizations website that
beautifully addresses photography and death: You
do not have to look at the photographs right away,
but they will be there when and if you are ready.
You cannot take this moment back. Remembrance
photography is a very important step in the healing
process. Photographs are one of the most precious
and tangible mementos that a parent can have,
showing the love and bond that was given and
shared with their baby. These portraits will last for
generations, and will honour and remember a tiny
life that is forever loved and cherished.
Tiny Light Foundation, a photographic charity
thetinylight.com
Memorial Jewelry, memorial jewelry
Silver Souls, silversoul.ca, (403) 581-8877
Grief Support for Families:
Sesame Street
Sesame Street has created a very resourceful website
to help children learn to cope with grief. The site
offers child friendly downloadable books, activities
and guides. Visit sesamestreet.org and navigate to
toolkits, where youll find a section about grief.
The Compass
Any books by Mitch Albom:

- Tuesdays with Morrie
- The Five People you Meet in Heaven
- For One More Day
Why are the Casseroles Always Tuna? A Loving
Look at the Lighter Side of Grief, by Darcie D. Sims
Other helpful sites:

grievingparents.ca
pilgrimshospice.com
yogaforgriefsupport.com
Palliative Care/Needs:
Meal Train
Meal Train is focused on the act of organizing meal
giving around significant life events.
mealtrain.com
Virtual Hospice:
Information and support on palliative and end of
life care, loss and grief.
virtualhospice.ca
Baby Loss:
A walk that honours the little lives lost.
walktoremember.ca
One who has journeyed in a strange land cannot
return unchanged.
-C.S. Lewis
141
There are moments that contribute to the patchwork

of our lives, both the good and the bad. Then there are
those moments that define who we are and what we
are made of. Some have the ability to take hold of us,
chew us up, and spit us out in the cold, dark wilderness
leaving us feeling numb, shocked, disoriented and lost.
Some even leave us struggling to breathe.
April 11, 2013 was that kind of moment. It was lifealtering. It took place inside that dimly lit exam room
where I was about to have what I thought would be a
normal, unremarkable, follow-up 30-week ultrasound
to check on our babys slightly enlarged kidneys. There I
was, blissfully awaiting a sneak peek of our third littlest
love growing inside me. Instead I heard what every
parent should go a lifetime without hearing: We have
found what looks like a major bleed inside your babys
brain. There I was, alone, hearing those words echoing
in my head, scared beyond belief. Panic-stricken,
I called my husband, only able to cry. I still dont
remember the words I said to him.
From that moment on, our world spiraled out of
control in disbelief and fear. Even today, I still cant put
those feelings into words. Our world became that of
ultrasounds, MRIs, blood work, fetal echoes and a team
of specialists. Consultation upon consultation. Tears
upon tears. Disbelief upon disbelief.
I knew this could happen, but not to us. Not to
me. Not to our baby. Our daughters diagnosis was
worse than we could imagine: a massive intracranial
hemorrhage, the cause of which was unknown. Severe
disabilities, hemiparalysis, hospitals, specialists,
rehabilitation. We were asked if we knew anyone with
special needs. No, we didnt. We were alone.
Weeks passed and we moved into our new reality.
We read. We asked questions. We researched. We
prayed. We became hopeful. We prepared ourselves
for what everyone called the new normal. We were
loved, supported and lifted with strength from our two
children, our families our friends and our little baby
growing inside. We were hoping for the best, whatever
that was and we would take on whatever life had in
store for us.
Then came May 23, 2013, the day of mixed emotions,
the day we would finally get to meet our daughter, this
tiny being of uncertainty, the one who would change not
only our lives but the lives of so many around us, the one
who would teach us more than we ever thought possible.
Katelyn was born via c-section and she surprised us all.
She needed no medical intervention. Even with her
damaged brain, she was utterly perfect. As an outsider,
you would have never known there was anything wrong.
It was as if the doctors had misdiagnosed her. That was
all I was praying for. We had four days of this amazing
bliss of uncertainty. We were so incredibly hopeful.
The doctors were unfortunately not wrong. The
142
Robert Carter
KATELYN by Trina McCartney
What we once enjoyed and deeply loved we can never

lose, for all that we love deeply becomes part of us.
- Helen Keller
days that followed were both more awful and more

wonderful than I could have ever imagined. Ironically
enough, those moments played together in chorus.
They were full of medical procedures and surgeries,
scans, xrays, tubes, lines, boluses, transfusions and
more words I wish I still didnt know. There were
sleepless nights and endless tears, fear and helplessness.
But they were also full of light and love. We held our
sweet baby, had visits from our older kids, and received
caring notes, thoughtful gestures, loving embraces,
meals, music in the healing garden and a shoulder to
cry on. We journeyed alongside nurses, doctors , family
and friends, always feeling wrapped in their kindness
and compassion. Those days taught me more about
fortitude, faith, love and trust than ever before.
On May 30, after two days of what seemed like a
downhill battle we decided that there would be no
more touches of intervention, only touches of love for
our baby girl. On May 31, our brave daughter, Katelyn,
full of so much grace, ended her battle and took her last
The Compass
breaths in our arms in the Stollery Childrens Hospital

surrounded by family and friends under the starry night
sky. Our hearts shattered for the loss of possibility,
the dreams, and the physical touch of her tiny body
that we would never feel again. Her last moments,
although incredibly heartbreaking, were also so peaceful
and beautiful. It was a night filled with so much love
you could feel it move throughout the room. I will be

eternally grateful for those eight days we had with our
youngest daughter. And although that wilderness that
we were once so afraid of is vastly different, yet just as
unknown and frightening, it is because of her that we
have the courage to move through it.
MY LITTLE GIRL BY by Will McCartney

In memory of our precious daughter, Katelyn Marie McCartney
May 23, 2013 May 31, 2013
Forever remembered, forever missed
Our daughter Katelyn had a total of two brain surgeries,

both on the same day. The first filled with so much
hope, the second with so much fear. Katelyn had been
diagnosed at 30 weeks in utero with a major bleed in
her brain. The next seven weeks leading up to her birth
were full of ultrasounds and difficult conversations with
neurosurgeons and neurologists. Up until then I didnt
know there was a difference between a neurologist
and a neurosurgeon. They told us that Katelyn would
live, that she would likely need a shunt put in to keep
the pressure off the good side of her brain a minor
neurosurgery. She would have problems with the
right side of her body and her ability to learn would be
significantly affected.
As a father and a husband I was crushed crushed
from hearing that my child, my little girl, was going
to have a harder life than anyone should have.
From morning to night I would have both fear and
disappointment in the pit of my stomach. Fear of the
unknown and what may come, and disappointment for
what could have been for my little girl.
I started making plans. There is someone in the U.S.
whose son has cerebral palsy and is quadriplegic. The
The Compass
father swims, bikes and runs though an entire ironman

all while carrying his adult son. That was going to be
me. I was going to do everything physically possible to
give my daughter the best life I possibly could. Yet the
fear of the unknown remained.
What multiplied my sorrow a thousand times was
watching my wife go through this all and being totally
unable to change any of it for her. At that point in our
lives I was working and she had been staying at home
with our other two kids. We both knew without saying
it that she would shoulder most of the burden of caring
for Katelyn, along with most of the emotional burden
as well. Within a week of learning about Katelyns
condition I had to go back to work, to be thankfully
distracted by the day to day and the needs of a busy
career. My wife was carrying this tiny, sacred little
combination of us both, feeling her kick all the time,
being constantly reminded of the ironic mix of beauty
and fear that lie ahead.
I would come home from work and almost
immediately feel guilty for having been away for
the day, to give the fear a back seat for a few hours,
while instead my wife had been bearing the constant
reminder all day. I was brought to tears more than once
just thinking about what my wife was going through.
On May 23, 2013, Katelyn was born and was doing
very well. Based on a MRI, the neurosurgeons highly
recommended the shunt. This first surgery held such
hope she was looking great and had exceeded the
expectations of doctors. The fear of the unknown
found us only a few hours after this surgery as her head
swelled and she nearly died right there in the NICU. A
second emergency surgery was done. I will never forget
looking at the permission form and bursting into tears
when I read the word craniotomy.
On May 31, we lost Katelyn. The weight was
unbearable, like a crushing stone of a hundred
emotions. While it may have been heavy for me, for
my wife it was even more so. The loss of Katelyn was
so much more physical for her, having just given birth,
than it was for me.
I took nearly four months off work to take care of my
143
wife and kids, and myself. It was one of the best decisions
I have ever made as it helped us to begin healing as a
family, and took the load of daily life off my wife, at least
for a while. There will always be emptiness in our lives,
something missing without her here. For myself, I look at

my own death in a different way. With any luck I will have
a long healthy life, and when I do leave this earth I know I
will on my way to see Katelyn again.
A SWEET ANGEL by Melinda Elgot

In loving memory of our precious daughter
Naomi Kathryne Elgot
September 7, 2004 - June 25, 2013.
You are missed every moment, remembered every
minute and loved with every beat of our hearts.
Though palliative care was a portion of our journey
with our daughters brain tumours, part of our coping
began at her diagnosis. Through every step of the
journey, openness and honesty with our daughter
Naomi and our other children has been paramount.
Though she was only five at the time of diagnosis,
we always shared with her what was happening, gave
her choices when possible and allowed her to have
a voice in her own care. As our other children were
three and one, we shared information with them in an
age-appropriate language and amount. Never did they
feel excluded from the process and when it came time
to enter palliative care, we had an honest and tearful
family talk. Honesty dispelled much of the fear.
These talks were often revisited on a daily basis as
our daughters illness progressed, but every time we
answered honestly, sometimes through tears, but
always truth. You know your children better than
anyone and you will know how to speak to them.
Some purely practical things we did were to label the
lids of medications (pain, morning, sleep, etc.), bring
daily life aids in to the home (suction, commode, bath
lift, etc.) and put out weekly emails about her condition
to our team of doctors and nurses. We tried to have
no daily expectations, as each day was truly a new
adventure. Savour the good days, breathe through the
tough, and make sure you take care of yourself.
We also brought on adult care to help out with our
other children a few hours a day. This was usually the
supper hour, when life gets busier for us all. This needs
144
to be someone that can walk in without judgment and

walk out still loving you all, even after seeing you at
your worst, and be honest about your needs. We put
out an email saying that our needs may change on a
minute-to-minute basis, so if you get to our door with
a meal, hug or help and we cant come or accept, know
we still love and appreciate you.
Lastly, one thing we said many times was that we
daily went to the graveyard, but we didnt live there. Be
prepared for the worst, but dont camp there. We sat
down one night for a 45-minute rapid-fire conversation
and planned the funeral. We did this so we could live
and enjoy the days we had. It is difficult to pray for a
miracle while planning a funeral, but it is possible and
we were freer for it.
Blessings to you all on this difficult journey.
How lucky I am to have something that makes
saying goodbye so hard.
- A.A. Milne
The Compass
THE INVISIBLE BOX by Melinda Elgot
Six days before Naomi passed away, Victor and I

gathered our other little ones around the table to share
our feelings and tell them that Naomi would soon die.
We wanted to again ask them about their preference
for involvement in her end stages of life, and include
them in the process as much as we were able. They both
asked if they could please be with her when she passed
and then my beautiful boy asked if he could give her a
present to take to heaven with her. I asked him what he
would like to give, and he said a colouring book.
I thank my God every time I remember you.
Philippians 1:3
Shepherding little hearts and minds is so tough, and I

felt it very important to make sure they were aware that
nothing physical could be taken from this earth, so we
began to discuss what sort of things she could take with
her when she left us. There was mention of love, hugs,
prayers and the like, but then an idea came to me. There
was a peace that entered my mind as the emotions in
the room swelled and my heart rolled down my cheeks.
They need to have something to give. So out of my
mouth tumbled these words; Should we make Naomi
an invisible box full of all of her favourite things? The
question only hung for seconds in the air before it was
answered with a resounding Yes from both our kids.
So, at that table, full of sadness and questions, four
hearts and eight hands fashioned an invisible box.
The invisible box: we gave it sides and a bottom,
making sure we all knew where we needed to place the
treasures we would send with her. Then the fun began.
We took turns making some of her favourite things
to be sure she would have them in heaven. DJ offered
a colouring book and forever-sharp pencil crayons.
The Compass
Phoebe made sushi and coloured her a picture. We all

laughed and joy burst through as we filled the box with
all we could dream would bring a smile to her face. It
was filled to the brim with gifts of every kind, as we
blew kisses and squeezed as much love in as we could.
The sweetness of my almost five-year-old princess
brushing imaginary tears from her cheeks in to the box
was enough to cause my husband and I to pause, hands
clasped in an offering of thanks as we watched our
children pour their love into their sister.
We were about to seal the box when we came to a
sudden stop. We had neglected to include Puppy. He is
a well-loved, well-travelled stuffed dog of Naomis and
they were inseparable. So with trembling hands, I sewed
a body, each hand around the table taking a turn to
fill him with stuffing, and then we gently sewed him
shut. DJ made a collar to match the predecessor and
we all lowered him in to the box filled with hope. As we
sealed it with kisses and hugs my heart burst with love,
not only for the child clinging to life in our room, or
the two sitting full of life and joy before me, but for the
husband that sat beside me, breaking the waves of the
storm. We four carried that invisible box quietly up the
stairs as not to wake our dearly loved, and we placed it
under the bed, knowing we could send it with her when
she slipped from this world.
Six days later, when Naomi breathed her last breath,
Daniel and Phoebe knelt beside her bed, pulled out the
box, kissed her gently and gave her the most precious
gift they had to give. The invisible box filled with the
love, born from the family she was blessed with and
that was blessed with her. To this day they talk of what
they sent with their big sister to heaven, and with it
the knowing that they showed her she was loved. And
those moments, and those memories, though some may
sting, are some of those I count most precious.
145
Notes
146
The Compass
CHAPTER 6:
Additional Resources
Illustration by MONIKA MELNYCHUK
Chapter 6: Additional Resources

149
SECTION 6.1: ACKNOWLEDGEMENTS
152
SECTION 6.2: GLOSSARY OF TERMS
153
SECTION 6.3: OLIVIAS JOURNEY
168
SECTION 6.4: MAPS OF THE STOLLERY CHILDRENS HOSPITAL
CHAPTER 6:
Additional Resources
SECTION 6.1 ACKNOWLEDGEMENTS
A doctor once told me, Your son will not live an ordinary
life. He was right: my sons life is nothing less than
extraordinary. Thank you to Jacob and Joshua, for whom
Im inspired to be the best I can be. You are truly my two
angels. Thank you to my husband, Danny, from whom
Ive received unconditional love and great strength. To
my parents, Kim and Annette, for not only walking every
step of this difficult journey with me, but also for carrying
me through the hardest times. Thank you to my fatherin-law, Manuel, for your quiet comfort and constant
support, and to my family, my Portuguese family, and
my friends: thank you from the bottom of my heart for
your support and love. To my best friends, Carla, Jamie,
Jill, Stacey and my sister Tammy words will never be
MELODY WILLIER
To the life that I never expected to live, thank you! I am a

stronger person and more importantly, it gave me a voice
and showed me how to use it. Thank you to my husband
our journey has made us stronger than ever, which I am
grateful for. You allowed me to discover the things that
I did not know I loved in life. Youre my best friend and
I wouldnt want to walk this journey with anyone else.
Thank you to all our family and friends for the endless
support, it is truly amazing and we are so grateful for you
all. Neil, Maggie, Bruce, Ann and all of our siblings, thank
you. We can never repay you for all the love, support
and help that you provide to us on a daily basis, your
unconditional love is like no other. To Brandy, for rarely
saying no, and for being more than a sister but a friend.
To the handful of people in my life that will cry with me,
laugh with me and just let me talk when I need it most
The Compass
enough. To Chris, Julie and the

Dirty Birds for honouring my
hero, Joshua, and for helping all
the children of neurosurgery.
Thanks to Melody for being
a part of this very special book
every step of the way and
sharing your passion, and to
Wendy, who led my family with
compassion and knowledge
through the hardest time in
our lives and then gave me her hand in friendship and
inspired me to become involved with Neurosurgery Kids
Fund. I am forever in your debt.
with no judging, thank you,

you know who you are. Melissa
and Wendy, I am not sure what
my life with be like without
you. Thank you for yesterday,
today and tomorrow. A special
thank you to my mother Rose;
you stand by me, travel across
Canada with me so your girls
can have the therapy they need,
you look after them so we can
have a break and most of all, you are a shining example of
the mother I want to be. Thank you will never be enough.
Most importantly, thank you to my heroes, my inspiration
to be a better person and to make a difference in this
world, my girls. I love you more than youll ever know.
Ryan Girard
MELISSA DA SILVA, B.Sc., RN
Ryan Girard
This book is a labour of love, and it wouldnt be possible without the invaluable contributions of so many.
149
WENDY BEAUDOIN, NP, PhD
I would like to thank my brother, Dave, and parents,

Judy and Doug, who have always believed that I can
achieve more than I thought possible. To my best friend
and sister, Julie, who has been my sounding board for so
many ideas and who ran with the Hope Stones project
when I had no energy left to make it a reality. Thank
you to Mike, Natalka, Tory and Allison, who stepped up
to fill such a huge void. To Tarah, Carolyn, Heidi, Russ
and many others for your friendship. To Stacey, Grant,
Arianne, Lauren, Jeff, Chris, Kristen, Tina and Jon, who
didnt hesitate to create the magic that is Camp Everest
and changed countless childrens lives.
Thank you to Melody for your dedication to this
book, and to everyone else who has contributed. A
very special thank you to Melissa, who is the heart
and soul of this book, truly embracing her strength
THANK YOU
This book has been a collaborative effort with valuable

contributions from so many.
We would like to thank Tammy Samoil, Deanna
Schulz and Lindsay Lord for offering your support,
stories and experience to make this book as resourceful
as possible. Thank you to Melinda Elgot, Trina and Will
McCartney for finding the strength to share your stories
so other parents can find comfort in them. May this
book be another part of the legacy in honour of your
beautiful angels, Naomi and Katelyn.
Thank you Carla Rodych, Soula Milonas, Diane
Dale, Ashley Dale, Denean Dale, Shannon Schmidt,
Ella Schmidt, Jacob Da Silva, Nicole Sabo, Sam Lord,
Jake Beaudoin, Martha Carreiro, Kim and Annette
Hage, Grace Metcalfe, Stacey Hall, Jen Litzenberg,
Julie Gunderson, Judy and Doug Mercer, Kelly Smart,
Arianne Piojo, Trevor Bosma, Andrew Powell, Danny
Da Silva and Kaela Hendra for sharing your inspiring
stories of courage and hope. These stories are the heart
of this book.
Thank you to Monica Sliwa, registered psychologist,
for your review of the section on coping. Thanks
to Mary Bowers and Jessica Bosma for sharing your
knowledge about schooling. Thank you to Emily Perl
Kingsley and Ellen Stumbo for giving us permission
to use your poetry in this book. Thank you Doreen
Hernandez, Pamela Murray and Dr. Jeff Pugh for
sharing your expertise. Thank you Lillian Mah for
allowing us to use the visual schedule for surgery. It is a
great resource for children. Thank you Mike Beaudoin
for your dedication to ensuring this book is held to
the highest standard. Thanks to the amazing team at
Venture Publishing Ruth Kelly, Andrea deBoer, Mifi
Purvis, Robbie Jeffrey, Charles Burke and Betty Feniak
Smith for going above and beyond any expectations
we had. And thanks you to Aaron Vaage, Lori Flink and
150
to bring hope for the future

for so many who will follow.
Josh and Jacob are very lucky
boys. To Aaron, Reade and
Viv, who made this crazy
dream a reality, even if you
wont address me as Supreme
Commander. Thank you
to my unbelievably patient
and understanding husband,
Brett, who has never given me
grief for working on this and other projects late into
the night and on weekends. Thank you Mackenzie
and Jake, for being two of the very best kids in the
entire world, and to my Olivia, who is ultimately my
inspiration for all of this.
Reade Beaudoin for your constant support.

Thank you to the Stollery Childrens Hospital
Foundation, who took the Neurosurgery Kids Fund
under their wings and helped us soar. Together, we will
continue to provide the best care for the sick children of
Alberta. To the therapists, nurses and hospital staff who
care for our children around the clock, on weekends
and holidays thank you for the sacrifices you make to
ensure our children receive the best care possible.
To the neurosurgical team, thank you for your
superior care of our children. During the darkest and
most frightening time in our lives, we are blessed
to hand our children over to a medical team of
knowledgeable, brilliant and compassionate individuals.
Thank you to Dr. Mehta for your contribution of
medical information, detailed review and writing the
foreword for this book. Your contribution to this book
and the Neurosurgery Kids Fund is invaluable.
Thank you to the organizers of our annual
fundraisers Red Carpet for Kids, Stand Up for
Love, Dirtybirds Charity Hockey Tournament, to
all lemonade stands, donations in lieu of birthday
gifts, company or personal fundraisers and personal
donators. Thank you for your commitment in
improving care for neurosurgical patients and their
families by supporting the Neurosurgery Kids Fund.
Our deepest gratitude to The Building Trades of
Alberta Charitable Foundation for their deep vested
interest in building a stronger and more supportive
community for our patients and family. Your support
and sponsorship of this book will make a meaningful
difference to families traveling the difficult journey
of pediatric neurosurgery. Thank you to the 75,000
workers, 21 unions and The Building Trades Charitable
Foundation for your support.
The Compass
Ryan Girard
Acknowledgements
Acknowledgements
The Compass is proudly supported by:
NEUROSURGERY KIDS FUND
The Neurosurgery Kids Fund is committed to

enriching the lives of children and the families of
children who have undergone brain or spinal surgery
at The Stollery Childrens Hospital. The Neurosurgery
Kids Fund raises all its own funds and manages its
own initiatives. A few of the funds programs and
initiatives include:
Camp Everest is a unique weekend camp
experience for children seven to 14 years old who
have undergone brain or spine surgery, injury or
conditions.
Family events are fun-filled events bringing our
families together.
Family support bags are filled with items intended
to provide support during initial diagnosis.
Emergency care bags include a variety of items,
including toiletries for families that come in when
their children have emergent or unexpected surgery.
Bereavement support bags
Hope Stones is a program that helps tell a childs
medical journey through the accumulation of beads.
Little Everest is a day camp that is aimed at our
patients younger than six years old and their
families.
In-hospital coffee program
Memorial Garden
Parent/caregiver/sibling support group is a support
program that meets up to four times a year in a laidback and fun atmosphere.
Research/Alberta Pediatric Neurosurgical
Database supports research that is essential to
best practices in providing children with the best
possible treatment. Research is a key component
for gaining knowledge and providing medical teams
with the information they need to establish new
guidelines.
Website-Parent Support/Physician Broadcasts is a
cyber-home for our patients, families and medical
staff to come together and gain knowledge.
FOLLOW US at neurosurgerykids.com
FACEBOOK: facebook.com/neurosurgerykids
TWITTER: @neuro_kids
Notes
The Compass
151
SECTION 6.2 GLOSSARY OF TERMS

As much as we love our doctors and nurses, sometimes we wish theyd speak in a language we can
understand. We compiled a list of common words used in the neurosurgical world and, with the
assistance of the medical team, defined them in a straightforward and practical way.
Analgesic - pain medication
Atrium - one of the two chambers of the heart
Bulb reservoir - a small dome on most shunt valves.
The doctor can use the bulb to test the condition of
the shunt
Burr hole - a procedure where a hole is drilled into the
skull exposing dura mater
Cerebral spinal fluid - clear fluid produced by the brain
that surrounds the brain and spinal cord
CT scan use of a tube-like machine that takes pictures
of the insides. Sometimes, a contrast dye is used to
get better pictures
Clear fluids - fluids that you can see through, such as
water or apple juice. Fluids like milk, formula and
orange juice are not clear fluids
Congenital - a condition present since birth
Craniotomy - removal of part of the skull to expose
brain
Cyst - a benign sac or closed cavity that is filled with
fluid. Most cysts in the brain are filled with CSF
Downward gaze - the ability to look downward.
The inability to look downward is often a sign of
increased pressure in the brain
EEG - brain cells talk to each other by creating small
electrical impulses. The EEG measures these impulses
or the electrical activity of the brain
Endoscope - a small camera used during surgery that
allows the doctor to see inside the body as the picture
shows up on a television monitor
EVD/external ventricular drainage - a drainage system
that is used when a shunt is infected. The CSF drains
to a collection bag on the outside of the body
Fontanelle also called the soft spot, it is an opening
between the sutures of the skull in infants or young
children
Hydrocephalus also called water on the brain, it
is an increased amount of fluid around the brain.
Shunts are used if there are problems with the fluid
and pressure
152
Intracranial pressure (ICP) pressure in the skull thus

in the brain and fluid
ICP monitor - placed in the skull, by a neurosurgeon, it
monitors pressure in the brain
Intubation - insertion of a tube in the mouth and
throat to help with breathing
Intraventricular hemorrhage (IVH) - a bleed within the
ventricular system
Lumbar puncture - also called a spinal tap, the doctor
will put a needle in lower spine (lumbar area) and
take a sample of the cerebral spinal fluid for testing.
This is a very common procedure
MRI - a scan that uses magnets and looks very closely
at the area it is investigating. It is a loud machine and
your child will be given ear protection
There are two types of MRI scans:
ast Head MRI - scan takes about 30 seconds and
F
does not require sedation
F
ull MRI - scan can take between 30 and 60
minutes. Your child will most likely be sedated
for these scans. If your child has a programmable
shunt, the doctor must be available afterwards to
check the setting as the scan can sometimes
cause changes
NPO (Nil per os) - Nothing by mouth is a medical term
used to tell you that your child may not eat or drink
prior to surgery. If your child requires medication,
discuss this with the doctor about how and when to
administor the medication
Papilledema - swelling of the optic nerve caused by
increased pressure
Seizure - an episode of disturbed brain activity
Shunt - a drain that is inserted to help drain fluid
accumulation in the brain
Stenosis - a blockage
Stroke - damage to the brain caused either by a blood
clot or from a bleed in the brain (hemorrhagic)
The Compass
Monika Melnychuk
SECTION 6.3 OLIVIAS JOURNEY
Olivias Journey features excerpts from Wendy Beaudoins blog, which details her experiences with her daughter
Olivia as she undergoes surgery. You can read more and follow along at facebook.com/neurosurgerykids
DECEMBER 31, 2013
Tags: anger, other children, what if?

As soon as I opened my eyes this morning, I was in a
bad mood. I felt irritable and annoyed and hadnt even
gotten out of bed. With a million little things to do to
get ready for a prolonged stay in the hospital, I decided
I would spend quality time with my other two kids,
Kenzie (nine years old) and Jake (six years old) and get
some errands done.
Right now, Olivia cant stand for more than about
five minutes without getting a blinding headache. By 10
minutes, her brain sinks into the top of her spinal cord
and makes her neck hurt and her hands so weak she
cant hold her juice box. It would be impossible to take
her shopping, so once again I call on my mom to come
over and stay with her while we head out.
Were at the mall when we bump into an old friend.
The conversations ends with her saying, Well good
luck with everything. I hope she comes through it OK.
I walk away and hear Kenzie quietly say, What does
she mean I hope she comes through it OK? Its not like
shes going to die I see her eyes well up with tears as
she looks down and it stops me in my tracks.
I give her a hug and say, She just means she hopes
she isnt in too much pain and that were home quickly.
She swallows her tears and says, Well why dont
people just say good luck then?
When I get home, I get a text from my husband Brett
who works out of town during the week. He has been
working a lot so he can take off as much time as he
needs in January. His plan is to work until Sunday so he
can come to her pre-admission visit Monday and then
be off for the next few weeks as necessary. He asks me a
simple question about what were doing on Sunday, and
I fire back a text that is clearly designed to start a fight.
The Compass
I just want to be mad today and I cant seem to find

anyone to be mad at.
I am mad that I cant work at the job that I love. I
am mad that my neighbour runs over to see how Liv
is doing and says, I dont know how you do it, as if I
actually have a choice in the matter. Im mad she was
born 16 weeks premature, and I am tired of being the
mom of a sick child. He sends me a text back, clearly
confused as to why Im freaking out over something
simple. We text back and forth and I send my last text
which basically says, Do whatever you want. Youre
going to anyway. There is a pause in the texting and
a couple minutes later my phone rings. I stare at it,
wanting to press the decline button, but I answer it
anyway.
You OK? he asks. My eyes fill up with tears and I
quickly head into our office and close the doors. I was
going to say something like, I need to get groceries
and you could help clean the house on Sunday, but
surprising even me I quietly say, What if she dies
on Tuesday? What if you spend the last two days of
her life working and regret it? I know the odds of her
not surviving the operation on Tuesday are slim. But
every time she goes to the operating room, I think
about it the entire week before. I think, What if this
is the last Christmas we have together, what if this is
the last movie we watch together and what if this is
the last Monday we spend together? They are fleeting
questions that I dont allow myself to answer.
Brett responds, I have been thinking the same thing
all week. Ill be home Thursday night. I realize that he
was just waiting for me to ask him to come home. That
even more than I need him home, he needs to be here. I
feel overcome by calm.
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Olivias Journey
JANUARY 2, 2014
Tags: psychologist, friendship, PTSD, insomnia

I saw a psychologist today. Yup, thats right. Actually
thats not exactly true. I wrote it, erased it, wrote it,
erased it and then finally wrote it again.
Its not that I think psychological help isnt insightful
and smart. I recommend it on a daily basis to the
caregivers of the patients I take care of and truly mean it.
Your child becoming sick, whether it is a life-long illness
or a sudden event, is debilitating; its like you cant
breathe and have no idea how to come up for air. I am
a fan of psychology, plus or minus medication, to help
anyone cope.
Olivia has seen a psychologist for four years. It started
out working on a needle phobia, and continued on to
the concept of what being normal is, and how to cope
with the lack of normalcy in her life. She walks a little
bit taller every time she leaves her psychologists office.
Even I look forward to those appointments. But in
10 and a half years and over 29 operations, Ive never
sought help. So why now? The truth is, I wouldnt have
seen anyone if it werent for my best friend. Im lucky
to have a best friend who has been there through every
single step of this journey. Its surprising how many
friends you lose when you have a sick child. Not because
they are evil or even uncaring but because the novelty
wears off, and when you constantly have to cancel plans
or have a child who isnt quite as quick or mobile as
others, people naturally move on. This happens with
friends even if you dont have a sick child, I suppose; I
just think it hurts more when you do. But this isnt the
case with my best friend.
I was thinking about Olivia and it hit me

out of the blue, like a ton of bricks:
This is never going to go away.
Her push for me to see someone stems from the fact
that I cant sleep. Over the last few years, I have eluded
sleep for extended periods of time. I can remember
when my trouble sleeping started. It was a couple years
ago. There really wasnt anything remarkable about the
day, but still I remember it so clearly. I was driving to
the grocery store in the evening to grab a few things. I
was thinking about Olivia and it hit me out of the blue,
like a ton of bricks: This is never going to go away. I
thought that if I read enough, worked hard enough, or
was just good enough, that at some point Id be able to
stop worrying about her. The realization that there was
never going to be an end to her illness was staggering.
I pulled over into a parking lot and just cried. I didnt
sleep more than two or three hours a night for the next
several months.
The next time I couldnt sleep for an extended period
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of time was last year when Olivia suddenly became

quite sick. She had been at school, three months after a
spinal shunt revision, when I got a call from my nanny
who said Olivia was crying hysterically and the back of
her t-shirt was wet. I called my mom to bring her up
to the hospital where I discovered her back incision
had opened up. Over the next couple days they tried to
sew it back together but the incision kept falling apart.
Finally they admitted her and took the spinal shunt (a
tube that runs from her spine to her stomach to drain
her spinal fluid) out in an effort to give her back a rest
and see if she even needed it any more. The first day
was fine. We were overjoyed that we might be able to
go down to just a VP shunt (a tube that runs under her
skin from the middle of her brain to her stomach). The
next night she woke me up at 1 a.m. and I could hear
her throwing up. When I came out of the room she was
holding her head crying.
The next few days were a blur. By mid-morning, her
neurosurgeon and pediatrician were there and everyone
looked incredibly worried. Over the course of the day
she developed double vision, became unconscious
and was intubated. The next two days were spent
in the operating room taking her skull apart and
reconstructing it to give her brain more room to swell. I
slept in a chair with my head on the foot of her bed. She
was in the intensive care for 10 days and then moved
to the regular unit. The next day she started to throw
up again, and at 4 p.m. on Christmas Eve doctors put a
new spinal shunt in. When she was able to walk again,
her right leg didnt work well and she was incredibly
weak. I didnt sleep from December to March. I barely
remember any of those months. Its like having PTSD,
but no one thinks of that for trauma related to our
sick kids. I remember not wanting to have visitors, not
wanting to go anywhere, and crying a lot.
Which brings me to the past month. This has been
the longest time weve ever waited for an operation.
Normally for shunted kids, they get sick and get their
shunt is revised in a matter of hours or a few days.
We have been waiting for a system to come from two
different countries and for her neurosurgeon and
pediatrician to return from holidays. The waiting is
awful. Every day I wonder if we are making the right
decision. Every day I go over what could possibly go
wrong and what the options are if things do. Every day I
worry. Every night I dont sleep. This time my best friend
pushed me to seek counselling, and this time I was ready
to accept the help.
There are six days until her operation. Im hoping for
some sleep before then.
The Compass
Olivias Journey
JANUARY 3, 2014
Tags: hospital preparation, expectation, learning

disabilities
Today was a day of errands. With just five days until
Olivias operation, its like planning for the worst
vacation ever. Doing laundry, cleaning the house
and preparing meals and necessities for the hospital.
Over the years of doing this, Ive learned some helpful
tricks things like stocking up on Superstore fleece
pajamas at Christmas time, as they are MRI compatible
and the arms are wide enough to fit an IV through
them easily; buying the colouring books at Walmart
that have adhesive tops so they stick to the walls of
her hospital room without tape; buying a brand new
pack of the Crayola thin markers, because they are light
and easy to color with when her hands arent working
right; and making sure I have warm pajamas, as the air
conditioning vents are conveniently located right over
the parent cots.
Ive learned to pack our own pillows, because sleeping
on a rubberized pillows sucks, and I make sure we have
a blanket that will cover her entire bed to try to hide
the all too obvious medicalness of the hospital. I also
spent part of the day organizing her schoolwork and
making sure her school laptop is up-to-date. Trying to
manage school when you are constantly in and out of
the hospital can be a challenge, overwhelming at times.
I remember the day we were told there was a problem
with Olivias brain. She was just eight days old and a
resident came in and told us she had a massive bleed in
her brain, and that she would probably never walk, feed
herself or see. I remember him patting me on the knee
and asking if I had any questions. I barely squeaked out
a no, so stunned I could hardly move. A few hours and
a few thousand tears later, the neurosurgeon walked in
the door. He checked her out and quickly reassured us
that the location of the bleed couldnt have been better.
The bleed was largely in her ventricles (the fluid filled
lakes in the middle of your brain) and not in the brain
tissue. He said, She will do great, Wendy. She will need
some surgery and may have some learning disabilities,
but otherwise will do quite well. Brett and I burst
into tears of relief and I said out loud, If all she has
is learning disabilities, I will never complain. I didnt
know how painful learning disabilities could be.
In the first grade, we started to notice how hard
it was for her to understand math. It was incredibly
frustrating for her to do homework assignments.
I would sit with her to work on the simplest of
concepts, like counting by fives, and I realized that she
couldnt grasp it. When she finally did grasp the concept
we would go on to something else. If we came back to
that concept five minutes later, it was like she had never
heard it before. She had problems with short-term
memory. I remember wrestling with what to do. I felt
incredibly guilty for feeling so disappointed.
The Compass
Every day I work with families that lose their child,

families that would literally give everything to be able
to worry about a learning disability instead of trying to
survive their first, fifth or even 10th start of the school
year without their pumpkin. Knowing these families
has changed me as a person and as a parent. Each one
of these kiddos, whether I knew them for eight days or
eight years has made me a more grateful person, a more
diligent clinician and a more patient mother. I knew I
should be able to accept her learning disability and just
be grateful to have her, but I couldnt.
I think any kid who has brain surgery should get a
get out of jail free card for academics. They should
be brilliant, school should come easy to them and they
should have every door in the world open for them to
choose the career of their choice. But it doesnt work
that way. In fact in most cases, its the exact opposite.
These kids fight so hard just to survive and then they
have to struggle every day in school. Its unfair. Even
more than worrying about expecting too much from
Olivia, I worried that I wouldnt expect enough.
I remember the day we were told there was

a problem with Olivias brain. She was just
eight days old and a resident came in and
told us she had a massive bleed in her brain,
and that she would probably never walk,
feed herself or see.
I remember sitting at the table one evening doing
homework with Olivia and Kenzie, as Kenzie whipped
through her assigned homework and I gave her a few
extra math sheets to work on. When Olivia finished her
math, 45 minutes after Kenzie was done, she asked me
if she needed to do any extra math sheets. I said, No,
thats OK, youve been working at it long enough. Not
looking up at me she said, Mom, why do you expect
less out of me than Kenzie? I had no response, because
the truth was, at that time, I did.
I come from a very academic family. From the time
we were little my parents would ask us what we were
going to take when we got to university, not if we got
there. I always assumed I would have children who
would do the same thing. Thats not to say I was always
a good student; I barely scraped by in high school until
one day my dad sat me down and said, You know
Wendy, not everyone is meant to go to post-secondary
education. We just want you to have a career and work
hard at it to be the best you can be. In my teenage
rebellion I thought, Screw you, I am going to study
hard and I will show you when I get in.
As Olivia moved forward in school, it was clear she
would need some help. I had no idea how to navigate
the school system. We had private neuropsych testing
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Olivias Journey
done to understand how she learns, but I didnt know

how to translate that into the real-world classroom
environment. Thank goodness for Bretts uncle,
the principal of a school. Otherwise, I would have
completely lost my mind by now. He would tell me to
go to the school and ask for various things. I would put
on my big-girl pants and march down to the school
to politely ask for what he had suggested only to get
a Sorry, we cant do that Wendy, and I would leave
feeling confused and frustrated.
I would call him and say the school cant do whatever it
is he wanted. He would ask me to repeat the conversation.
He would then direct me to go back and say what seemed
to me like the exact same thing with one or two words
changed and I would magically get a of course we can
do that. That was when I realized that this was an area
of her life that we would never be able to fix on our own,
we would always need help. Even with help navigating
the school system, I completely underestimated how
heartbreaking it is to watch your child struggle to learn.
It is like when your child is the only kid not invited to the
popular kids birthday party, only every day for the rest of
their school life. People often say, Well, she just may never
go to university,
I know I am supposed to think, Well thats ok, shes
alive and thats good enough for me, but I dont. I feel sad
and mad and annoyed, every time.

In the last couple years, Ive had to understand a whole
new area of technology related to learning. I have
learned about apps that shortened the length of an
article, dictation programs, pens that you can record on,
programs that can anticipate what she wants to write,
and I have learned how to be a squeaky wheel, but not
too squeaky, at school so her needs are met. I pushed
her to work on a laptop all the time so she can have her
school work with her whether in the hospital, on the
couch or in the class. I learned to let some old-school
ideas go like she needs to memorize the times tables
and accept that she will always need a calculator to figure
out fives times five. I have learned how to stop trying
to fix her academically, and instead focus on finding
new and innovative ways to maximize her strengths and
minimize her weaknesses. In truth, I had to get over
myself and focus on her. Im not quite there yet. I still
wake up every day hoping school will just click for her,
and every day wont be such a challenge. Selfishly
I wish the ache in my heart that comes with watching
her struggle would subside, but it hasnt, yet.
There are five days until we head to the hospital. It is
hard to decide if I want the time to speed up to get the
surgery over with or slow down so I can have more time
with her.
JANUARY 5, 2014
Tags: peaceful moment, medical kids

I lay in bed this morning with a numb arm. When I
woke up, Olivia had assumed her usual position when
she isnt feeling well and was asleep with her head in
crook of my arm, managing to cut off the blood supply
to my fingers. But I didnt move. Like many parents
when they catch a moment of their sleeping childs
peacefulness I stare at her and gently kiss her head
feeling overwhelmed by how much I love her. When
I kiss her head I can feel where she is still missing the
bone in her skull from last years operations, and notice
the railroad tracks of scars that crisscross her head, but
they truly dont bother me. All of these little things, and
big things, make her who she is and make us who we
are as a family. I couldnt love her more for that.
There is something about medical children that is
different from others, not better, certainly not worse,
but different. It took me years to see a pattern in all of
the children that I take care of who have had significant
medical events in their lives, but I see it clear as day
now. I can pick out a child who has had multiple
surgeries even before I even know their history,
something that at times makes me look psychic to my
loved ones. They are old souls in little bodies. They feel
156
more deeply, love more strongly and unfortunately fall

harder than the average child. Thats not to say that
every child who has had a hangnail removed is like this,
but if you have a medical child in your life, you know
what I am talking about.
The Compass
Olivias Journey
JANUARY 6, 2014
Tags: coping, fear, strategies, the box

Finally Olivia begins to manifest the stress of the
situation and I see her get progressively grumpier as the
day of the operation nears, with Jake getting the brunt
of her anger. I give her a few minutes and then knock
on her door. Through tears she says, I just want to be
alone. More than anything I want to open the door
and make everything OK, but I give her a few minutes
to cry it out.
When I come back upstairs, I listen at the door and
cant hear her crying. I assume she has fallen asleep
but when I open the door she is laying on her bed
writing on some index cards. I lay down beside her on
the bed and listen to how annoying Jake is and how
much better our family would be if we just had all girls,
Except for Daddy, but he doesnt count. I ask her what
she is working on and she looks down a bit embarrassed
and says, I am writing down some things I am worried
about and putting them in this box.
Im actually not sure what to say. I want to read all
the cards to see what is on her mind but dont want
to have her shut down if I push. Can I read what you
wrote? I ask.
Sure, she says, but reaches in the box, riffles around
and takes two cards out and shoves then under her
pillow. Of course those are the two I really want to read,
but I pretend I didnt see her do it.
So you are writing down what you are worried about
and going to bring the box to the hospital with you? I
think that is brilliant Liv. Very grown up.
She is still looking down colouring on one and says,
No. I am going to leave the worries here on my shelf so
I dont have to worry about them when I am in there.
I am speechless. I have seen this box on her shelf
for years. In fact we just cleaned her entire room two
days ago and I wanted to throw it out, but she quickly
grabbed it and said she wanted to leave it on her shelf.
I assumed it had some kid treasures in it like rocks or
stickers or nail polish, but now I understand why. My
hands shake a bit as I look pick up the cards, not sure
if I am ready to read what she has written. The first
card I pick up says, 6. I worry about strange dogs. I
am relieved to see a normal kid worry on the card. She
reaches over and turns the card over in my hand. On
the back I write what I can do so I am not so scared,
she says with some pride. This one says, I just ask the
owner if the dog is friendly. It seems logical to me, and
I smile a little. The next card reads 2. I worry about
going into surgery. I turn the card over and read, I
can hold my moms hand when they put the mask on
my face. I have done this 29 times and I am OK. That
one hurts a bit more. I want to ask her some comforting
question about what specifically she is worried about,
but I cant put the words together so I just keep reading.
3. I worry that my IV needle will get stuck, it reads.
The Compass
I ask my mom if thats possible. She wont lie to me.

I am trying desperately not to let the stinging in my
eyes spill over my cheeks and risk breaking the magic of
this moment. 4. I worry that I wont recognize people
when I wake up from the operation, and I just ask my
mom who people are. The first tear slides down my
face. Then comes the card I am dreading, the one that I
know must be in here.
1. I worry that I wont wake up and no one will
remember me. I fall to pieces, the tears streaming down
my face, and I try not to make any noise. She looks up at
me from her colouring, but doesnt say a word and looks
back down. Through blurred eyes I read the next one,
5. I worry that my eyes will get swollen again and that
they will never open back up. Last year after one of her
operations her eyes swelled shut for a day or two and it
scared her to death as she thought she was blind. Since
then she wont sleep with her lights off. It doesnt surprise
me that this is a worry, but doesnt hurt any less either.
And the last card reads 7. I worry about strangers, with
My mom tells me who it is. I can ask Whats your name.
At first I am shy then I get to know them.
There are two other cards in the bottom of the box,
one written in an adults handwriting and one written
in hers. I realize that this idea must have come from
her psychologist, whom she trusts so completely. The
card written in adult writing says, Being brave means
doing something even though you are scared, and the
card written by her says, Olivias coping strategies:
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Olivias Journey
When I get scared I can: one do some deep belly

breathing, two think of fun memories like my old
house, three I can bring a book to read or four I
can watch TV. When I regain my composure I cant
help but wonder what could possibly be on the other
two cards that could be more heart wrenching that
these. The truth is, I dont want to read them anymore.
Then I put all of the cards back in her box and ask her
if she needs anything. She says she doesnt but I grab
her some cookies and milk and put it on her bedside
anyway. When I am leaving the room I kiss her on the
head and tell her I am proud of her. She gives me a
shy smile and says, I know, Mom. I am constantly
amazed at how much I learn from her and I wonder
if Id be able to leave my worries on the shelf like that.
JANUARY 7, 2014
Tags: disappointment, preparation

Its funny to me how walking into the hospital as the
parent of a patient is so different from walking in there
as an employee. The hospital itself actually smells
different, looks different and feels different. Shortcuts I
would normally take suddenly feel off limits. Even using
my key to go into my own office somehow feels wrong.
We had to be at the pre-admission clinic for 1 p.m.
today. All morning I checked off items on my Hospital
To Do List. Slippers. Check. Markers. Check. iPad
charger. Check. As I quickly complete the list I hear
my phone buzz. Incoming text. I grab my phone half
looking at it while Im reading the last few items on
the list. There is a text from her neurosurgeon. Surgery
has been postponed until Wednesday. My heart sinks.
Not because she is super sick today or anything, but
because there is something about the psychology of
getting prepared for the hospital that is not conducive
to adding in another day. I have things timed down to
the minute so we have enough time to get everything
done, but not too much time to have to think about
what is coming.
Brett and I have been very lucky to have a

surgeon who is the perfect fit for us. He is
very honest and straightforward with little
to no sugar coating.
I stare at my phone for a minute trying to decide if
I want to call and see if there is a way that the surgery
can still be done tomorrow, but quickly snap out of
it. I know the million reasons that surgeries can be
postponed and none of them are just because. We
have bumped other children when Olivia has been
critically ill, causing other families the same angst I now
feel. We have been bumped before. It is unfortunately
just another aspect of the whole process that is out of
158
What a relief that would be.

I ask her if she would mind if I share the cards with
some other people. She of course asks me who and why,
and I explain the blog. She asks me why adults would
be interested in her cards and I explain that sometimes
hearing someone elses story helps people to cope with
their own. She gives me a simple sure, but I can tell
she is proud that any adult could learn anything from
her. She asks me if she has to include the two cards
form under her pillow and I say, Only if you want to.
She thinks for a minute and says No, I think Ill just
keep those ones, and secretly Im relieved. I love that
she is assertive enough to know her own boundaries.
Three more days until her operation.
our control. Brett has run out to do some errands so I

text him the news. I text a dozen other people who had
plans that either involved coming to the hospital or
taking care of my other two children. Then I turn to the
couch to tell Olivia. She immediately bursts into tears,
frustrated that she has to wait another day. I point out
all the advantages of waiting, which actually help me
feel less disappointed. We can have Samantha (her best
friend) and their family over for dinner and you and I
can finish the level on Luigis Haunted Castle, I say as
she wipes the tears from her face. Promise? she asks.
Of course, I say texting Samanthas mom right away
to prove to her I mean it.
We still have to head to the pre-admission clinic for
1 p.m. This is always the most important appointment
for Olivia because she gets a chance to speak to the
doctor who will put her to sleep. She desperately needs
the reassurance that they will start her IV when she is
asleep and this is her chance to make sure it will happen
the same way it has 29 times before. When we get there,
her neurosurgeon and Stacey are waiting for us. She
hugs them both and we head in to the clinic to chat.
Its funny how people connect with different doctors.
You can have the same personality trait in a surgeon
that will be perfect for one family and not so great for
another. One is not necessarily better than the other,
just a better fit. Brett and I have been very lucky to have
a surgeon who is the perfect fit for us. He is very honest
and straightforward with little to no sugar coating. For
me this is essential, but at times it can sting a bit. He
sits down to talk to Brett. He and I have hashed out
what needs to be done a million times during clinic
appointments and phone calls, and this is his time to
talk directly to Brett. I listen intently as he goes over
the history of where we have been, what the current
problems are, and where we need to go on Wednesday.
I know it all but I listen like its brand new information.
Then come the two things I know he is going to
The Compass
Olivias Journey
say that I dread: In case this doesnt work. and

If we need to do something else I know logically
there are no guarantees, especially in neurosurgery.
I know this isnt a sure thing, otherwise we wouldnt be
on operation number 30, but every time it makes me
flinch. Dont get me wrong, I would much rather have
the sting of this conversation before the operation,
than the gut wrenching disappointment of something
happening that we didnt know was a possibility. When
he is done he leaves, and the anesthesiologist comes in
to see if we have any questions. Usually I make Olivia
ask the questions she has, as I think she needs to learn
to advocate for herself being that she will always require
surgical care and at some point she will be an adult and
responsible for her own medical journey. It scares me to
death even thinking about that, but that doesnt make it
any less of a reality.
She asks the doctor, Can you gas me tomorrow? I
hate it when she says that. It sounds so morbid. The
anesthesiologist knows exactly that she means can
she be asleep before they start her IV? The doctor says
she doesnt think it will be a problem. There are no
promises, but it should be OK. Well done, I think.
Another thing I have learned in dealing with sick
children is never to promise anything you dont know
you can deliver. If things dont go as planned, they
will never trust you again. The anesthesiologist we are
seeing today will not necessarily be the doctor putting
her to sleep on Wednesday, so she doesnt give her an
JANUARY 7, 2014
Tags: fear, anticipation

The operation is tomorrow morning at 7:20 a.m. We
have to be at the hospital for 6 a.m. and we have to get
Olivia up at 5 a.m. to wash her hair with the pre-op
shampoo. Im dreading it as I know she will cry from the
JANUARY 8, 2014
Tags: surgery day

As soon as she opens her eyes, she says, I dont want to
go Mommy. Its always Mommy when she is scared.
I know kiddo, I say, but just think in a few hours
it will all be done.
Do you think we can do my Lego tonight when I
wake up? She asks.
Of course honey, I say, and she smiles and reaches
across to give me a big hug. I go downstairs to finish
The Compass
absolute yes, but the answer is good enough to calm

Olivia enough that she flips open her Nintendo DS and
starts to play it again.
When we are done and driving home, Olivia pipes
up from that back seat, I cant wait to get this over
with and go skiing in Jasper next month. Without
thinking I say, Oh Liv, you wont be ready to ski next
month. Damn it. Rookie mistake. I should have just let
it slide today. There will be plenty of time to discuss it
in the coming weeks. She immediately burst into tears.
I hate having surgery! Its so unfair! Everyone has a
better life than me! Everyone gets to do fun things and
I just lay on the couch doing nothing! I hate my life!
she shouts almost incomprehensibly through her sobs.
I immediately retreat and say, Lets just see how it
goes, thats a long time away, but its too late. She sinks
down in the back seat with her head on the arm rest, as
her crying has increased her headache tenfold. Im so
tired.
We get home and continue with our plans to order
Chinese food, Olivias requested meal. Brett hates the
favourite meal before an operation ritual. He thinks
its like a prisoners last meal before an execution. But
its tradition, and she requests the meal even before
we ask her because she finds so much comfort in the
routine. Immediately after dinner she asks to go to bed.
Its been a long day, long month, long 10 years.
Have a good sleep kiddo. I love you.
time she opens her eyes until she goes to the operating
room, out of fear. She will plead for me not to take her,
then get mad and then cling to both of us as we walk
down the long hall to the operating room.
packing the other two lunches. I hear my mom open

the front door and tears spill over my cheeks. There is
nothing like having a sick child to make you feel like a
child again.
Two hours down, three to go. Seems like time is
crawling by. Im so tired.
Shes out of the operating room and settled in bed.
Back and neck sore but tolerable. The neurosurgeon said
it went great. I cant quite relax, but Im getting there.
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Olivias Journey
JANUARY 9, 2014
Tags: medical team, the village

As I lay here on the cot, the step-down ICU is quiet,
but my thoughts are not. What a day. I forget each
time how overwhelming this whole process is. The day
went by in the blink of an eye and even now, I can only
remember snapshots of it. While its an exhausting
process, it is one that amazes me every time. At times
I hear people complain about our health care system,
and while I agree that there is certainly room for
improvement, I marvel at the number of people it takes
to make sure my child receives exceptional care.
The nurses in the pre-admission clinic check on us
several times to see if we need a blanket, a pillow, the
lights on, the lights dimmed or even a hug. Exceptional.
Olivias operation is delayed due to a trauma that
required many people to work through the entire night.
Instead of then requiring that same staff to work all day
or cancelling Olivias operation, the doctors and nurses
juggle complicated scheduling to make sure that my
daughter is cared for by well rested and competent staff.
Exceptional.
We walk in to the operating room and a

nurse immediately gets her a warm flannel
blanket, while another nurse makes an
exaggerated comment about how beautiful
her hair is and smiles.
While we are waiting, her neurosurgeon wanders
by to see how we are holding up. He stops to tell us
a funny story about something that happened on his
Christmas holidays which makes both Brett and I laugh
out loud, something we couldnt have needed more at
that exact time. Exceptional. When it is finally our time
to go to the operating room, a porter comes to walk us
down. He addresses Olivia by her name, asks her if she
needs anything, and makes a point to tell her a funny
joke as she is clearly nervous. I grab my phone to take it
with me and glance at it realizing I have more than one
hundred messages. Messages of love, kind words, caring
and above all else, hope.
When we get to the OR, the anesthesiologist, the
one who was not supposed to be doing Olivias case
but was flexible enough to come in to her theater and
help out, comes in to talk to her. He asks our opinion
on what works best for her for pain, asks which hand
she writes with so he can make sure he puts her IV in
the other hand because he knows she loves to colour
and is more than happy to give her an immunization
while she is asleep so she can have one less poke while
awake. We walk in to the OR and a nurse immediately
gets her a warm flannel blanket, while another nurse
makes an exaggerated comment about how beautiful
her hair is and smiles. When she is asleep, they let me
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kiss her cheek and one of the nurses walks me out

of the operating room, then gives me a big hug and
promises me they will take good care of my daughter.
Exceptional.
We grab her stuff and walk out to the cafeteria where
my sister Julie and brother in law TM are sitting. They
drove in from Calgary, like every operation before,
to be there for Brett and I when we need them the
most. Exceptional especially in light of the fact TM
just had surgery on a broken leg a few days ago. In the
meantime, Aaron has picked Kenzie up to drive her to
school and Kurt and Marnie have offered to treat Jake to
an amazing day to keep his mind off the fact that both
Brett and I are not around. Exceptional. By the time
we get up to her floor and check in at the desk on the
Pediatric Surgical Unit, my mom has texted me to see
if we need anything. Normally she would be in Phoenix
by now, but she stayed back to help Brett and me with
the kids.
We sit and wait for the operation to be over. Old
friends Stacey and Carolyn show up, as always, to
bring food and make us laugh. Exceptional. New faces
Martin and Wendy bring hugs, laughs, food and above
all friendship to help the time pass. Exceptional. All
the while, dozens of people stop by and hundreds of
texts roll in to keep our spirits high. Theyre a welcome
distraction from all of the worry. When Olivia gets
back, tired, disoriented and in pain, the nurses react
quickly and with amazing competence to get her moved
in to bed, pain medications administered and tuck her
in with warm blankets. Her neurosurgeon and both
pediatricians have already stopped in to assess her
and make sure her post-op course is going as planned.
Exceptional and critical.
Natalka pops in with gifts of warm blankets and tears
of love like she always does. Aaron and Carolyn come
back up to the hospital to bring the all-important pizza
and Livs two best friends Sammy and Lila to make her
happy. Melissa shows up with gifts and snacks from so
many good friends and well-wishers that I am stunned
and Olivia is thrilled. Ideas flow about new initiatives
and plans for the fund as we are once again reminded
The Compass
Olivias Journey
why we do it. Olivias neurosurgeon pops back up to

check on her one last time as he is concerned about
some potential leaking in her back. Her night nurse
comes on and checks her out completely to make sure
nothing is being missed.
As I lie here watching my beautiful but fragile little
girl recover from surgery on her brain and spine, I am

facing an amazing mom with a new baby. It is her first
baby and first step in her medical journey. I hope and
pray she has an exceptional village like mine to help her
raise her medical child. It makes all the difference.
JANUARY 10, 2014
Tags: other children, staying home, self-identity

Some people do the hospital well. I am not one
of them. Its ironic, since I work here, I know. The
first 48 hours in the hospital are really hard for me. I
dont sit around well, ever. I like to be busy and have
a dozen frying pans in the fire at the best of times.
It is always the way I have been, and short of some
miracle, it is probably always the way I will be. I really
love everything that I do that makes me busy: my
family life, my job and the fund. My family life goes
without saying. But worrying about fundraising or
program planning for the Neurosurgery Kids Fund is
also super rewarding. I get to have discussions with
various people who all genuinely believe that kids who
have had brain or spinal cord surgery or injury deserve
better, people who are willing to work hard enough
to find enough money to be able to make a tangible
difference in these kids lives, and in my daughters life,
regardless of the cost. I love it all. And I love the work
part of my life as well. I love the patient population,
the team I work with and the families. When I am
working I am not thought of as a mother, or a wife or
even a friend. I am judged based on my clinical skills,
not how good my kids manners are.
Taking care of other peoples sick children is
unbelievably rewarding, and truthfully much easier
than taking care of my own sick child. Watching my
daughter suffer is agonizing. Its interesting when
people suggest to me that I take more time off to be
home with her, like time is the same thing as going to
Disneyland or Hawaii. Taking time off when Olivia is
really sick or in the hospital is a no-brainer for me. But
time off when she is sick, but not too sick, is almost
too much time for me to analyze Olivias situation
and second guess the decisions Ive made. It is more
time to stare at her, actually trying to will her to be
healthier. And while I do love the time I spend with
her in the hospital, I miss the comfort of my familys
JANUARY 11, 2014
Tags: good day, family and friends

Today was a good day. Today was a day of hope and
inspiration, both from my daughter and the village that is
raising her. Today was a day of visits from family, friends
and even patients. It was also the day all of the cards sent
for her arrived. It was an inspiring day, a day that gives
The Compass
home routine. I miss reading with Kenzie and Jake and

baths and watching Despicable Me in bed. Watching
the other two leave at the end of the day is so hard
every time. Kenzie cries and holds on to me until Brett
pries her off my arm. I miss talking to Brett about little
things because when Olivia in in the hospital all of our
conversations are about juggling Kenzie and Jake or
inquires about her pain or how often she has vomited in
the last hour. I want to talk about who is making dinner
or who is picking up the kids, but I already know the
answer to both questions and neither of them is me.
me strength for a hundred more medical days.

Day three in the hospital. I got some sleep this
morning, which made me feel like a new person. Olivia
had a quiet day today. Her neck was pretty sore so she
mostly just watched TV and slept. The day flew by with
amazing visits from friends and family.
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Olivias Journey
JANUARY 12, 2014
Tags: a divided family

The underlying cause of Olivias frustration and mine is
watching life go by and not being able to join in. While
this hospital stay has only been four days, it has been
years of sitting on the sidelines. You learn to live this
parallel life, even within your own family. Sometimes
you just dont want to do it anymore.
The underlying cause of Olivias frustration

and mine is watching life go by and not
being able to join in.
This is made glaringly obvious today with Jake having
his first downhill ski race, which I desperately would
love to see. We had a sporting identity crisis for our kids
largely influenced by Olivias illness. Both of the girls
started out ski racing and Jake was in hockey. Like every
family with kids in sports we were pulled a million
different ways, but somehow figured out how, with
many stops at Tim Hortons and McDonalds on the
weekend, to balance it all. Then Olivia got sick again
and has essentially been sick for the past three years.
This throws a whole new set of circumstances in to
the mix. With her not being able to stand up for long,
we need to be in three places at once, and even that is
JANUARY 14, 2014
Tags: normal
Olivia and I have always had this tradition of late-night
movies and popcorn when she is in hospital. I crawled
in bed with her and after some fidgeting and fussing
around so we were both comfortable, she started the
movie. I asked her what she had picked and she said
the movie was called Koala Kid. She explained that
the movie is about a koala that is white among a pack
of grey koala bears and he doesnt fit in so he joins a
carnival. For as long as I can remember my kids have
had this sort of odd tradition of picking a character to
be in every movie that they watch. Its not that they
do anything with the character they have picked, like
acting out the role or saying their lines, its just who
they identify with. At times this has caused some
serious meltdowns and occasionally almost leads to
blows, as there is a cardinal rule that two people cant be
the same character.
We thought if we told her she was normal

often enough she actually would be.
As the movie began Olivia asked me who I was going
to be. I threw the question back at her asked her who
she wanted to be, letting her pick first, and she said,
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manageable if she is not in surgery or the PICU or the

inpatient unit at the Stollery. Except it breaks her heart
to watch us all go while she is left at home. My mom
can come sit with her, but then once again she is left
out. Misery loves company and if I stay, I can see she
feels like we are suffering in silence together and it
takes most of the sting out of the disappointment.
I see many medical families struggle with the same
thing. If your child has trouble walking, one parent goes
to the birthday party while the other one stays home
because the birthday party venue is not conducive to
walking. If your child is restricted in what they can eat,
then one parent is constantly on, trying to make sure
the child doesnt eat anything that could be medically
harmful. If you have to be at a million medical
appointments, you get tired of dragging the whole clan
with you and start to make other arrangements for
the siblings so you can survive the day. Whatever the
reason, the outcome is all the same: your family ends up
divided. You constantly balance what is right for your
medical child and what is right for your other children.
If youre not careful, you soon realize that you havent
had a Saturday or Sunday in the same vicinity for
months on end. Its not difficult to see why the divorce
rate for families with a chronically ill child is staggering.
Well obviously I am the white koala. I said to her,

Dont you want to be the girl koala? knowing that this
is usually the fight between her and Kenzie at home.
Without hesitating she said, No, shes normal. Im the
white koala. Normal. Average. Just like everyone else.
These are words and statements that have taken on
a negative connotation in todays day and age where
many strive to be bigger, faster and better. Striving to be
normal can seem to some like a simple goal, or even
a silly one, but for Olivia, feeling normal can at times
feel impossible. When she is particularly frustrated with
her medical situation, just wanting to be normal is her
go-to phrase. And oddly enough, it is a phrase that I
struggle with. Sometimes I say, You are normal, but
thats not entirely true. While there are parts of her life
that are certainly normal, there is clearly a part of her
life that is not normal.
When Olivia was little, Brett and I worked very
hard to make sure that she felt normal. We would
minimize her medical needs to her, our family, her
teachers and even ourselves. We thought if we told
her she was normal often enough she actually would
be. The problem with this approach was that we
forgot to honour what she had actually been through.
I remember once she said to me, But Im just not
normal.
The Compass
Olivias Journey
For the first time I changed my canned response

and said, Yeah, youre right. You dont have a life like
everyone else. You have too many doctors appointments
and have had too many surgeries. But look at the cool
things you have got to do from having gone through
all of this. You get to go to camp, you have friends you
would not have had otherwise and you got to have your
Make a Wish trip.
JANUARY 15, 2014
Tags: post-operative issues, hope

Its been a long couple days. Olivia had some sort of
virus on Tuesday and as a result was either crying,
throwing up or sleeping. Between the ondansetron,
gravol, maxeran, Zantac and morphine she found some
relief at the end of the day and managed to get some
much-needed sleep over night. That led us to the big
day yesterday the day of sitting up. When she woke up
in the morning you could almost cut the excitement in
the room with a knife. Sitting up a task so simple, but
so huge. Sitting up means the ability to use a reclining
wheelchair, which means escape from her room. For me
it means one step closer to home. We raised the head of
her bed to 20 degrees, which doesnt sound like much
but is actually more upright than you would think.
The first half an hour goes by and she is doing
great. Her back looks good, and she doesnt have a
headache. At the one-hour mark I take a peek at her
back. Immediately I feel my stomach sink. Swelling. Not
dramatic, but swelling none the less. It is so subtle that
at first I am not sure if I might even be imagining it. I
look a couple more times and then finally ask her nurse
to look. Shes not concerned. Half hour later I look
again. More swelling, still not dramatic but I am more
convinced it is actually there. I have her neurosurgeon
JANUARY 20, 2014
Tags: a turn for the worse, when it rains it pours

I have to admit I have sat here for a long time with a
heavy heart and tears in my eyes as I search for the
words to write an update in Olivias Journey. Olivia
has been on strict bed rest for the last few weeks
and has been vomiting continually. Despite this, she
finds the strength to smile. The doctors placed her on
But I didnt ask for any of that, she said.

I told her, You are right Liv, you certainly didnt ask
for any of those cool things, but you didnt ask for any
of the surgeries either. Your life isnt the same as most
of the kids in your class, and it probably never will be.
I remember her hugging me, almost relieved, like what
she had always known in her head, that she didnt have
a normal life, I finally said out loud.
paged. He wanders in a bit later and takes a look. Yep,

its leaking. Not through the skin, which is infinitely
worse, but shes leaking fluid around the valve. He says
to put her back flat and leaves. I feel the tears well up
in my eyes. Having a leak under the skin isnt really
surprising. She has had them before. Sometimes they
have gotten better on their own and at other times
they have led to months in the hospital. I knew it was a
possibility but it still hurts.
Hope is a tricky thing, because you need it

every day to get out of bed.
Just once I would like to sail though a procedure, heal
with no complications. Why does it feel like a punch in
the gut every time? The answer is because of hope. Hope
is a tricky thing, because you need it every day to get
out of bed, to smile at everyone and to survive chronic
illness. But hope causes disappointment and pain as
well. Hope makes you feel like something has failed even
when it is an expected complication. Hope never totally
allows you to prepare for what is to come. But hope is
why Olivia is who she is. Hope has allowed us to try
something new and to want a better life for her.
intravenous nutrition to help her maintain her intake

and hydration. She is such a small little bug to start
with she cant afford to lose anything else. Tomorrow,
she will need to return to the OR because something is
wrong with her shunt. This will be operation 31. And to
make matters worse, I have the stomach flu.
JANUARY 21, 2014
Tags: waiting
Sweet Olivia is in the operating room....
The Compass
163
Olivias Journey
JANUARY 22, 2014
Tags: advice from dad, trust, the right team

Thank god we have the medical team we do.
My dad loves to give advice. When I was younger,
it used to drive me around the bend, but as I got
older I realized that among the slightly long-winded
explanations, there is always some deep wisdom. One of
the things he stressed to me early in my career was this:
surround yourself with a great team and then get out of
their way. Support them. Believe in them. Never step on
them and they will take you farther than you will ever get
on your own. I have always taken this to heart.
Advocating for your child is a skill and an

art at the same time. Assembling a medical
team that wants to work for you and your
child is critical.
Early on in my life, certainly in my career, I got the
greatest sense of satisfaction from praise. Being told I
was a good nurse, a good mother, a good wife meant
more to me than most other things in my life. But as
I have grown confident in myself, I find a far greater
sense of satisfaction in watching others grow and soar
than any accolades I ever receive. I couldnt care less if
I get credit for the Neurosurgery Kids Fund or Camp
Everest or even my family, as long as they all end up
amazing. So over the years I have worked and fought for
a great neurosurgical team to work with, great nurses
in my clinics and on the ward and a great team to help
me raise my family. For my children I need a strong
family, strong marriage, great friends and in Olivias
case, a great medical team. It took me a while to figure
out what that meant for her, for my husband and for
myself. Over the years it took some tweaking of her
team to find the right people to help us care for her
a team that fit our vision of what we wanted her life to
be, what we thought was realistic and what we thought
she deserved. After working so hard to find that team, it
would seem crazy to me to then not have faith in them
and get out of their way.
Finally after years of struggling and failing to control
her medical situation, I handed it over to her team.
I remember sitting down with her team and saying,
I cant make these decisions any more. I just need to
be her mom, and feeling this tremendous weight lifted
from my very soul. I could physically feel it.
Advocating for your child is a skill and an art at the
same time. Assembling a medical team that wants to
164
work for you and your child is critical. I have learned this
skill from watching countless parents do it poorly and
others who are absolutely amazing at it. At times I think
people equate advocating for your child with controlling
the entire medical situation. This isnt the best way to
ensure your childs care, or the best way to save your
sanity. Not trying to control the situation is not the same
as being uninterested or uninformed. I always have an
opinion about what she needs. The difference is that
instead of trying to learn more than the people who have
spent their lives learning neurosurgical procedures, I
have become an expert in her.
I know Olivia inside and out. I know when she is
good, when she is off, and when she is really sick. I
know her medical history, although at times even that
can be a huge amount of information to sift through.
I know to bring her in for a checkup or follow-up
when she is feeling great, because even though going
to another appointment is the last thing I want, her
medical team needs to see who she is when she is great
so they can remember what we are all trying to achieve.
I know when to stand my ground and when to listen
because I may not be able to see the entire situation
objectively. On Monday when her neurosurgeon told
me she needed to go back to the operating room, I
knew she wasnt well when she was standing upright,
but I left him to chart the course of actions. The
decision was easy. I have learned that relying on the
team doesnt mean you are weak or uninformed or
uncaring. As parents we sometimes put a tremendous
amount of time and energy in to researching our childs
conditions and possible solutions. Education and
information is power. It is equally important to make
sure you assemble the right team for you and your
child, a team that fits your beliefs, your thoughts and
your needs. Taking the time and energy to do this will
not only help save a bit of your sanity, but it also means
even when you are burnt out or exhausted, your child
will receive the very best care from that team, since they
are as invested as you are in her health and happiness.
The valve in Olivias spine is fixed. Its back to bed
rest for at least a week to try to get the incisions to
heal. I had a night of nausea and general grumpiness.
Im not sure if she is getting the flu I had. I sure hope
not. Operation number 31 is under our belt. Lucky
number 31? I hope so. Thanks so much to everyone for
your thoughts and prayers over the past few weeks. It
constantly amazes me how good people really are.
The Compass
Olivias Journey
JANUARY 25, 2014
Tags: friendship
I had a panic attack last night. All of a sudden at 10
p.m., the light at the end of this particular hospital
admission seemed to go out for me. How is her back
possibly going to heal? If it does heal, what if it doesnt
work? In the midst of my panic I sent out two SOS texts
to very good friends hoping one of them happened
to have their phone on. Instantly my phone binged
twice. Both were awake. Both wanted to know what
was going on. As I spoke to one of them and texted
the other I realized how much art there is to being the
friend of a chronically ill child. One of my friends went
over the medical details with me, both of us trying to
determine if there is a medical reason for my panic and
the other one texted me to breathe and try to relax.
Both recognized it was late and I was tired, but both
took different approaches to get to the same point: we
are here for you and you will get through this one way
or the other.
You can Google what to say to the parent of a
chronically ill child. You will instantly get thousands of
hits of blogs or lists or articles on what we all want you
to say to us when we are in a crisis situation. There are
an equal number of lists of what not to say to us when
we are losing our minds. Sometimes when I read them I
think, Who the heck would ever want to be the friend
of a chronically or acutely ill child? There are so many
rules about what to say and how to say it, things that if
you dont do them exactly right we will surely implode
and never recover.
The truth is, most, if not all parents of a chronically
ill child are unbelievably strong, they just might not
know it yet. Thats where friends and family come in.
Lists of what you should or should not say are good.
Not great but good. They are generic and generally a
common-sense list of statements that help if you have
never been around a sick child, or sick person for that
matter, in your entire life. I hesitated to write a note on
this topic for fear that all of my friends and family are
going to worry that I mean them. In truth I am very
lucky. My friends and family have been doing sick
with me since Olivia was born and have come to do
it really well. The thoughts in this blog are just that,
thoughts. They are not rules, or lists or anything of
that sort for people to live or die by. They are simply
things friends and families have done in my life that
have left an impression on me. If you are reading this
and are a friend of mine, youre totally not the example
of what not to do. That is that other friend I have.
You know the one...
For me, being the friend of someone with a sick child
starts with a conscious decision you have to make.
Are you in or are you out? Are you totally in? Neither
answer is wrong. Where I think harm can be done is
when you sign up for one category and then when the
The Compass
going gets tough, decide to switch to another team. So

think about where you fit in, what you can commit to,
and what role you can play early on and then try to stick
to it. Obviously life happens and things will change that
may not be in your control. If your role has to change,
thats OK too, just be honest about it. Im not saying
that if you email your friend that you need to take a
break from the friendship that they are going to bake
you a loaf of bread and send you a Thank you for being
honest card. The truth is they will probably be hurt
and angry and even say a few unpleasant things about
you in their head or even out loud. But they wont
continue to rely on you, they will be able to seek out
a new place to find that support. Of course, its much
easier to say than do. Its even more rarely ever done,
but its something to consider none the less.
The truth is, most, if not all parents of

a chronically ill child are unbelievably
strong, they just might not know it yet.
Thats where friends and family come in.
Not many friends opt out, but it does happen. Out
means you dont have the time, energy or resources to
be a source of support for the parent or caregiver. It does
not mean you are a bad person, should be burned at the
stake or are going to you-know-where when your time
expires. I have had many friendships come and go in my
life. When Olivia was born, Brett and I had some friends
that had a lot going on in their lives, things that were out
of their control or for whatever reason, prevented them
from maintaining a friendship with us in any meaningful
way. There were some hurt feelings. As the years move
on, some of these relationships have repaired themselves
and have become the friendships on which we rely
the most.
I think the lack of disappointment and fact that trust
between us was never violated or broken allowed this.
On the other hand, we have had some real struggles
with some people. Relationships that were once strong
suddenly ended over seemingly silly events. Making a
conscious decision to not be there for a friend or family
member when their child is sick should not be done
lightly as it is very difficult, if not impossible to recover
from. Its like not going to someones wedding, or major
event like the birth of their child. You can never get that
moment back, the memory of that event will always be
with you absent. Even if your relationship is struggling
when the hospitalization occurs, think long and hard
about how you handle it. This may be one of those times
in your life where you do in fact suck it up and be there
for them because if you choose not to, it is almost the
same as letting the relationship go entirely.
Being in is where most people fall. This is where you
165
Olivias Journey
drop in and email, text or give a phone call on a regular

basis to see how things are going. You are the fantastic
people in our lives who bring meals, fruit and sneak in
the occasional bottle of wine in the bottom of a care
package. You know to always call before you come, just
in case things have changed medically or we are just
too tired to have visitors. You judge the length of your
visit from the cues both Olivia and I give, which can be
different from visit to visit. You get that when the nurse
comes in to help her to the bathroom, you dont offer
to step out, you just do it, and that when she starts to
puke you give me a quick hug, ask if I need any help and
then cut your visit short, even though you drove for 35
minutes to get there.
All of your seemingly small offers, collectively, leave a
huge impression on my soul and my family. Thanks.
And then there are the totally in friends and family.
You are my 10 p.m. calls. You are the ones that never miss
an operation or a hospitalization even if your visit doesnt
come until late at night. You know to pace yourself in
our friendship, because while everyone will come for
the initial hospitalization or even the day of the surgery,
you will be there in a month or two or 18 when many
others have gone back to their normal routine. You dont
promise stuff you cant deliver. You have read about my
childs illness and while you may not understand it all,
you have taken the time to learn the basics. You dont
offer advice on what to do, but you know sometimes I
need to run through things out loud to get it straight in
my head. If you do have advice or a question you phrase
it in a seamless way that doesnt make me feel like I have
missed something or am being crazy. You come to the
hospital, late at night, even when I tell you not to because
you know I need you. You are there at 3 a.m. when we
arrive and are still there in the afternoon when there is a
chance there may be a catastrophic outcome. You show
up at 6 a.m. and leave a coffee with a note at my bedside,
because you know I need sleep more than a visit. You
offer to update everyone else because I am too tired to.
I can call you and impose, totally screwing up your
plans, and I never even know that I did because you just
make it work. You dont go skiing when you really want
to, so you can hang out with us and we dont feel left
behind yet again. You can make me laugh when all I want
to do is cry and crack an inappropriate joke about my
childs illness because you know I will think it is funny.
166
You will periodically cry with me and for me at the same

time because you know I am dying a bit inside. You will
drive up for a day on the weekend when its the last thing
you feel like doing. You wont go to Phoenix because
you know I cant do it without you. You will call me and
offer a holiday for me and my other kids because you
understand they are struggling too. You will spend hours
on the phone talking with me when I feel like all of this is
my fault. You are in for the long haul and even though we
both may stumble, we will always find our way back to
the friendship we both signed up for. You are why I can
get up, every morning, and do this all again. You allow
me to breathe.
Olivia is still flat in bed, but out of her room. I have figured
out how to steer the huge bed, and I have only ran over
two peoples toes and one old man. Ive made bracelets,
coloured pictures, watched a thousand episodes of Austin
& Ally and I think am actually starting to enjoy them,
much to my dismay. I had dinner with my mom and the
kids at the hospital last night in the garden and enjoyed, to
the tips of my toes, watching my girls lay in bed together
and chat about what they are going to do when we get
home. Im taking some excellent advice and trying to live
for the moment instead of worrying about what is to come
on Monday. I hope everyone enjoys the early spring today
before the polar vortex descends again tomorrow.
HERES HOW YOU HELPED
Y
ou made a point to visit us in the hospital once a week.
Y
ou cut your visit short when you saw it wasnt a great
day, even though you drove 35 minutes to get here.
Y
ou dropped off a meal for us when we got home.
Y
ou went late to a party when you saw I needed to chat.
Y
ou discretely stepped out of the room for a few
minutes when bathroom time came
Y
ou never say you know what I am going through.
Y
ou took my other kids out to an event.
Y
ou took my shopping list (and money and bought my
groceries).
Y
ou stayed away when you had a cold, but still called
me.
Y
ou keep in touch with calls, texts, Facebook and words
of encouragement.
The Compass
Olivias Journey
JANUARY 28, 2014
Tags: hospital friendships, cupcakes

Friendships in the hospital, and really among all sick
kids, are fast and deep. Im not entirely sure if it is the
common bond of being a sick child or the fact they
spend such a concentrated amount of time together
that leads to this, but some of Olivias closest friends
have come from the hospital. Sometimes I wonder if
the fact that some of these friends may die makes them
shed their shyness and dive in heart first. Sometimes I
worry as well.
At the age of 10, Olivia has been to the funerals of
four friends and has missed the funeral of two others
that she would have desperately liked to have gone to,
but was too sick. She has stuffies in her room that have
a special place as they have been given to her by two
amazing moms after they lost their daughters. They
are the only two stuffies that have their own beds and
that regularly get dusted. Jake touched one of them one
time, and it is the only time I have actually seen Olivia
punch him. I didnt even really punish her because I
could see the panic and anguish. Facing the mortality
of children is crushing, beyond crushing, each and
every time.
Last December was the closest we have ever come
to losing Olivia. There were moments when I thought
we had lost the battle. Now I think all the time, What
would I be doing if we had lost her? Sometimes I hear
a song on the radio and think, I should remember this
song just in case I ever have to plan her funeral, and
then just as quickly I feel like I am going to throw up for
even letting the thought cross my mind. I am a nurse
its a funny profession as we are always talking about
boundaries. You have to have boundaries. You can never
cross these boundaries for fear of being thought of as
weak or unprofessional. How anyone could honestly
think that we are going to take care of and at times lose
children and not be absolutely devastated is beyond me.
There are times that we have lost a patient and I have
cried every day, for weeks, on the way home from work.
But I could never say that out loud for fear of being
thought of as having bad boundaries. When I talk to the
surgeons we often wonder what people think we are
like. Do they really think we come to work, operate on
children, see the devastating effects of brain tumours or
bleeds or car accidents and then just walk out like it was
just another day at the office? All of us can remember
every patient we have lost, the circumstances around
that death and the impact of that day on the family.
And I have learned to love the kids, grieve for their loss,
use what I have learned from them to better who I am
both personally and professionally and then tuck them
The Compass
away in my heart so I can get up the next day and care

for the next critically ill child. I never forget them.
The walls in my office are papered with pictures,
notes and funeral notices of the children that I have
lost in my practice. It is overflowing, but I cant take
even one down as even the thought of rearranging
them brings me anxiety and sadness. It is these children
that give me the sense of urgency for change. Waiting
to build an environment that is conducive to support
and research and sometimes just pure, uncensored fun
cannot wait, because if it has to, some of these children
will no longer be here.
Olivia and her new little friend sold their

cupcakes at a makeshift cupcake stand outside
of the pediatric surgical unit. They wore
matching night gowns and giggled every time
someone bought a cupcake for two dollars.
In the three years we have been doing Camp Everest
we have lost 15 per cent of our campers. Unacceptable.
And while I am realistic and realize that for now we
cant save every child, as a community we can maximize
every year, every day, every single minute that they
have. This is what makes me put my sick child to bed
on day 23 in the hospital and then at 11:30 p.m. head to
my office to pay invoices, work on fundraisers and plan
the summer camps for next year, because they all just
deserve more and it is up to all of us to give them that.
I tried to get Olivia up again on Monday and her back
leaked under the skin again. I was absolutely devastated,
but as always, I have to suck it up and cope with it as
there is nothing but time that can help. Being able to
get up in the wheelchair is a huge help. Olivia and her
new little friend sold their cupcakes at a makeshift
cupcake stand outside of the pediatric surgical unit.
They wore matching night gowns and giggled every
time someone bought a cupcake for two dollars.
They sold all the cupcakes in 30 minutes, but made a
friendship that will last a lifetime. I will try to get her up
again next Monday. Its hard to believe we are coming
up on a month here. Hopefully well be home next
week. My fingers are crossed.
Continue following Wendy and Olivias
journey at: facebook.com/neurosurgerykids
167
SECTION 6.4 MAP OF THE STOLLERY CHILDRENS HOSPITAL

All maps courtesy of albertahealthservices.ca
Photos approved by Stollery Childrens Hospital and AHS
MAP
SITE
GE
Walter C. Mackenzie
87 AVE
87 AVE
Jubilee
Auditorium
Lister
Hall
OPR Outpatient
Edmonton
Clinic
North
Residence
College Plaza
Public Parking
Entrance
Medical Sciences
Building
WALTER C.
MACKENZIE
HEALTH
SCIENCES
CENTRE
Future Site
Pedestrian/
LRT Crossing
P
EMERGENCY
84 AVE
OUTPATIENT
RESIDENCE
HEALTH
SCIENCES
LRT
RTF
85 AVE
Clinical
Sciences
Building
83 AVE.
Blood
Donor
Clinic
Staff Parkade
Public
Parkade
Aberhart
Centre
CP
ST
Corbett
Hall
Cro
Can ss
Institcer
ute
83 AVE
Edmonton Clinic South
117
86 AVE
Zeidler
Ledcor
Centre
117 ST
CP
HRIF
112 ST
Building
114 ST
CSB Clinical Sciences
Heritage
Medical
Research
Katz Group Rexall Centre

for Pharmacy &
Health Research
ABC Aberhart Centre
82 AVE
P
UNIV
ERSI
TY A
VE
IC3 PRE-ADMISSION CLINIC is located immediately to the right through this entrance
Stollery Childrens Hospital EMERGENCY ENTRANCE
The SURGERY CLINIC is in the Clinical Sciences Building, on the main floor behind the elevators
The PARKADE and the hospital are connected by a pedway
168
The Compass
ABA
Adm
Adm
Adu
Ber
Cas
Clin
Clin
A
A
C
D
F
M
M
P
P
S
S
Cys
Day
Day
Der
Diag
EEG
Em
End
Fac
Fac
Foo
11
C
C
H
M
Tr
Map of The Stollery Childrens Hospital
LEVEL
The PUBLIC UNDERGROUND PARKING

entrance is on 114 Street side
(LRT side) of hospital
Walter C. Mackenzie
0E2
0E1
Elevators/Stairs
Security has
LOST AND FOUND
Public Route
0D2
Washrooms
0G1
Parking
0H1
0D1
0H2
0C3
5 Shaw Interactive
Theatre
6 ABACUS
0C2
0H3 /
0H4
0J1
3 Human Resources
4 Shipping
& Receiving
Visit the Parking Office

for PARKING PASSES
1 Security Office
2 Parking Office
N
0A2
0A6
7 Health Records
0A1
0A3
0C1
0A8
0B2
0B3 /
0B4
CSB
Clinical
Science
Building
0B1
University of Alberta Hospital
The Compass
WALTER C. MACKENZIE HEALTH SCIENCES CENTRE

Stollery Childrens Hospital Mazankowski Alberta Heart Institute
169
LEVEL
Walter C. Mackenzie
Elevators/Stairs/
Escalator
1A6 EMERGENCY ENTRANCE
Medical Sciences Building
1K
Zeidler Ledcor Centre
Public Route
1E
Information
1 114 St Entrance
2 Stollery Entrance
4 Admitting
1
5
8 Bernard Snell Hall
$ ATM
To get to EEGN(1A5)
AND STOLLERY DAY
SURGERY (1A7) go in the
112 Street entrance and
turn left immediately
1J
1H
1C4
57-3/8
57-3/8
8
1A1
1A5
1H
1A2
1C3
1C2
1G
STOLLERY ENTRANCE
This entrance faces
the LRT station on 114
Street. Immediately
inside this door is the
1C3 PRE-ADMISSION
CLINIC
F
M
O
1D
5 Mazankowski
Entrance
6 Emergency
Entrance
7 112 St Entrance
1F
3 MRI
1C1
1A7
OutPatient
Residence
1A6
EMERGENCY
1A3
1A8
1B
1U
10
CSB
Clinical
Sciences
Building
11
HELPFUL NOTE: The 112 Street side

of hospital faces Tim Hortons. The
114 Street side faces the LRT station
TIP: If you are in the hospital
looking for the Pre-admission Clinic,
go to the Stollery Bear Elevators.
1C3 is in the rainbow hallway
170
Adm
Adm
Ber
Cas
Clin
A
Washrooms
DI
MAP
REF.
The Compass
P
P
P
T
Cys
Day
Day
Dia
ECG
EEG
Em
End
Foo
1
C
H
M
T
LEVEL
Walter C. Mackenzie
Elevators/Stairs/
Escalator
MAP
REF.
PEDIATRIC AMBULATORY CLINIC (2E)

To easily access this clinic, take
the north elevator to the 2nd floor
Medical Sciences Building
Zeidler Ledcor Centre
2K
Public Route
Atrium Area
2F
Washrooms
1 John W. Scott
Health Sciences
Library
2 Faculty of Medicine
and Dentistry
2E
4
2G
Pedway to Parking
3 Diagnostic Imaging
$ ATM
2D
2
2H
2C1
3
7
2J2
2G2
2A1
2A2
2C2
2C3
2A5
2A6
2A3
2A9
2A6
2A7
2B
Out-Patient
Residence
CSB
Clinical
Science
Building
10
A map is located at
the back showing the
route from the clinic to
DIAGNOSTIC IMAGING
11
The Compass
171
LEVEL
Walter C. Mackenzie
Elevators/Stairs/
Escalator
3E
3F
3D
3G
3A1 PICU use the phone on the

wall to call before entering. Push the
silver circle button and wash your
hands when entering and exiting
Public Route
Atrium Area
Washrooms
3H
3A1
3C
3A2
3A9
3A3
3A5
3A7 / 3A8
3B
3A6
CSB
Clinical
Science
Building
3A3 NICU all visitors must stop

at the main desk
3RD FLOOR WAY-FINDING
University of Alberta Hospital Stollery Childrens Hospital Mazankowski Alberta Heart Institute
172
The Compass
LEVEL
4E2 NEURO ONCOLOGY CLINIC
Walter C. Mackenzie
SCHOOL
MAIN GLASS
ELEVATORS
Elevators/Stairs
Public Route
4E
4F
4D
4G
HELPFUL HINT: The hospital

is organized in alphabetical order.
In the SE corner you start with the
A-units. As you continue to the right
the units go from A to G and the
number represents the floor
Atrium Area
Washrooms
1 Level 4 Atrium,
Labyrinth &
2 Guru Nanak Dev

Healing Garden
NKF
COFFEE
STATION
Patient Library
4H
4A2
4C
4B
4A5 / 4A6
4A4
4A9
HEALING
GARDEN
STOLLERY
BEAR
ELEVATORS
4A7/4A8
CSB
Clinical
Science
Building
4D has an under the sea

theme. Your child will come
here if they dont go to
ICU. The waiting room just
outside 4D is a good place
The FAMILY ROOM has computers,
WALTER C. MACKENZIE HEALTH
SCIENCES CENTRE
to sit during OR
pamphlets and a sitting room
THE BEACH
University of Alberta Hospital Stollery Childrens Hospital Mazankowski Alberta Heart Institute
The Compass
173
LEVEL
Walter C. Mackenzie
Elevators/Stairs
Public Route
5F
5E
Atrium Area
Washrooms
5G4 PEDIATRIC UNIT
Chapel/Prayer
Centre
5G
5D
N
5H
5A2
5A1
5C
5B
5A5 / 5A6
5A4
5A9
5A7 / 5A8
CSB
Clinical
Science
Building
174

The Compass
GENERAL DIRECTORY
LEVEL
ABACUS
Administration
Admitting & Registration
Adult Echocardiography
Bernard Snell Hall
Cashiers Office
Clinical Engineering
Clinics
A.H. Owen & Family Stroke Prevention Clinic
Adult Pre-Admission Clinic
Cardiac Outpatient Services
Dental Clinic
Family Medicine Clinic
Medicine Clinic
Metabolic Clinic
Pediatric Ambulatory Clinic (Stollery)

Pediatric Pre-Admission Clinic (Stollery)
Seniors Clinic
Surgery Clinic
Cystology
Day Surgery
Day Ward
Dermatology Clinic
Diagnostic Imaging
EEG Lab (Radiology)
Emergency Department
Endoscopy
Facilities Management
Faculty of Medicine & Dentistry
Food Services
112th Street Grill
Cafeteria
Caffe Fantini
Healthy Trendz Cafe
Mr Sub
Trendz Express
The Compass
0
1
1
1
1
1
0
1
2
2
2
1
2
2
1
1
CSB0
2
1
1
1
CSB2
2
1
1
1
0
2
1
1
2
1
1
1
LEVEL
Friends of the University Hospital (Volunteers)
Gift Shops
Bearyland (Stollery)
The Friends Gift Shop

Health Records
Kaw-Kaw-Koo Aboriginal Gathering Room
Lab Medicine
Libraries
John Scott Health Sciences Library
Patient Library
Lost & Found (Security)
McMullen Art Gallery
MRI (Magnetic Resonance Imaging)
Outpatient Lab
Outpatient Residence
Parking Office
Pharmacy (Rexall Outpatient Pharmacy)
Physiotherapy (Rehabilitation Services)
Plaster Room
Prayer Centre/Chapel
Psychiatric Services
Radiology (Diagnostic Imaging)
Rehabilitation Services
Renal Dialysis
Security
Shaw Interactive Theatre
Sigmoidoscopy
Social Work
Speech Pathology & Audiology
Spiritual Care and Multicultural Services
Stollery Childrens Hospital Foundation

The Family Room
Transplant Clinics
University Hospital Foundation
Urology (Cystoscopy)
X-ray (Diagnostic Imaging)
1
1
1
0
5
4
2
4
0
1
1
1
OPR
0
1
1
1
5
1
2
1
5
0
0
1
1
1
1
CP
4
CSB1
1
1
2

175
DIRECTIONS TO DIAGNOSTIC IMAGING AND MRI FROM THE PEDIATRIC SURGERY CLINIC
176
STEP 1
Turn right
coming out of
the Pediatric
Surgery Clinic.
STEP 2
Continue down
the hallway and
turn left at the
exit sign.
STEP 3
Go straight all the
way to the doors.
STEP 4
Go through these
doors.
STEP 5
Go straight
through these
doors and head
to the left.
STEP 6
Walk ahead, past
the Caf, through
the doors.
STEP 7
Continue
through these
doors and look to
the right.
STEP 8
Take this elevator
to Level 2.
The Compass
Directions to Diagnostic Imaging and MRI from the Pediatric Surgery Clinic
STEP 10
Continue down
this hallway and
turn right at
the end and go
straight.
STEP 9
Once off the
elevator, head
straight through
these doors.
STEP 11
You have arrived at Diagnostic Imaging 2H. Check in
at the registration desk. Diagnostic Imaging is the area
you will go to if your child requires a CAT scan. If you
are looking for the MRI department please take Stollery
Elevators immediately in front of the Diagnostic Imaging
to the main floor.
The Compass
STEP 12
On the main
floor, you will see
Admitting and
Registration to
the right of the
elevators. Walk
in that direction.
STEP 13
You will see this
sign straight
ahead.
STEP 14
Follow the arrow
to the right and
walk to the end of
the hall. At the end
of the hall, turn
right. You will see a
set of sliding doors
and glass blocks.
If you see this, you
are headed in the
right direction.
STEP 15
Right before
you reach the
doors, you will
find the MRI
department
on the left-hand
side. You made it!
177
Notes
178
The Compass
The Neurosurgery Kids Fund is a group of professionals who are dedicated to enriching
the lives of children with neurosurgical conditions, supporting their families and providing
world-class neurosurgical care at the Stollery Childrens Hospital in Edmonton, Alberta.
The mission of the NKF is to help pediatric neurosurgical patients and their families navigate
their medical journey with as much support, information and resources as possible.
For more information, visit neurosurgerykids.com or call (780) 913-7346.
@neuro_kids
facebook.com/neurosurgerykids
Cover illustration by CHRISTIANE BEAUREGARD

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CHAPTER 1:NEUROSURGERY

Illustration by CHRISTIANE BEAUREGARD

FOREWORD: Dr. Vivek Mehta

PREFACE: Melissas Story

Chapter 2: Hospitalization & Surgery

SECTION 2.1: PREPARING FOR ADMISSION

SECTION 2.2: VISUAL SCHEDULE

SECTION 2.3: HOSPITALIZATION

SECTION 2.4: GOING HOME

SECTION 2.5: REHABILITATION

SECTION 2.6: PROFILES

Chapter 3: Education & Assistance

SECTION 3.1: SCHOOL

SECTION 3.2: FINANCIAL ASSISTANCE

Chapter 4: Therapy, Fun & Products

SECTION 4.1: COMPLEMENTARY THERAPY

SECTION 4.2: FUN

SECTION 4.3: SPECIALIZED PRODUCTS

Chapter 5: Stories of Coping

SECTION 5.1: GRIEVING

SECTION 5.2: REAL-LIFE STORIES

Chapter 6: Additional Resources

SECTION 6.1: ACKNOWLEDGEMENTS

SECTION 6.2: GLOSSARY OF TERMS

SECTION 6.3: OLIVIAS JOURNEY

SECTION 6.4: MAPS OF THE STOLLERY CHILDRENS HOSPITAL

When we started this journey with our children, we

HOW THE COMPASS CAN GUIDE YOU

This book is not intended to replace the information

COFFEE STAINS AND DOG EARS

We have written and organized this book to follow you

TEAM NEURO: (L-R) Melody Willier, Wendy Beaudoin and

Two days earlier, I delivered my second son by

The Stollery Childrens Hospital Foundation is committed to funding excellence.

The business of magazines

The Compass is published for the The Neurosurgery

Editors: Robbie Jeffrey, Mifi Purvis

Illustration by STEVE ADAMS

Neurosurgical diagnosis worksheet

NOTES FROM MEDICAL TEAM:

SECTION 1.2 UNDERSTANDING THE DIAGNOSIS

An overview of the brain and spinal cord

The brain sits inside the skull and is surrounded by

Corpus callosum is the part of the brain that allows

An Overview of the Brain and Spinal Cord

The cerebrum is the largest part of the brain and

THE FOUR LOBES OF THE BRAIN

OTHER PARTS OF THE BRAIN

The cerebellum is at the base and the back of the

THE BRAIN STEM

Midbrain: This part of the brainstem is important

that make up the cerebrum: frontal, temporal, parietal

information to the occipital lobe of the brain where it

endocrine system working correctly.

An Overview of the Brain and Spinal Cord

WHAT ARE CRANIAL NERVES?

Cranial nerves are not like spinal nerves. The main

Movement of the eyes

Sensation to your face and movement of

Side-to-side movement of the eyes

Movement of your face, tearing from

Hearing and balance

Controls the muscles for swallowing,

Controls the muscles in the back of the

Midbrain: This part of the brainstem is important

Anaesthesiologists play a very important role in

A charge nurse (CN) is the nurse who is responsible

A nursing attendant (NAT) is a person who

Audiologists are practitioners who treat patients