Spirit Breakthrough
Spina Bifida and
& Hope
While there is no cure for spina bifida or
hydrocephalus there is hope. Ongoing
therapy, medical care and/or surgical
treatments are available to manage these
complex conditions. Today, research,
advances in medical technology and
support for people with spina bifida and
hydrocephalus enable them to live full
and productive lives
Programs and services offered by
SB&H:
 Help line
 Online community forum
 Information and education
 Researched, quality education
 Resource Centre
 Prevention and awareness programs
 CURRENT magazine and community
based Bulletin keeps you informed of
latest developments
Spina Bifida has touched many lives.
Hydrocephalus
SB&H has been very helpful in learning
about, providing support and raising
awareness about Spina Bifida and Putting a Face to
Hydrocephalus.
Spina Bifida
Our goal is to make Spina Bifida a
household name, and create awareness
of what Spina Bifida looks like.
This is done by showing off children
like Nickolas, and fundraising events
through the year to raise money and
awareness.
To learn more about Spina Bifida and
Nickolas’ journey please visit my blog at
www.riddingfamily.blogspot.com
Spina Bifida & Hydrocephalus
Association of Ontario
555 Richmond St., West
P.O. Box 103, Suite 1006,
Toronto, Ontario, M5V 3B1
Phone 416-214-1056
Raising awareness and
Fax 416-214-1446
support in the
provincial@shbao.on.ca
http://www.sbhao.on.ca/
Charitable Registration
community
#10799 9310 RR0001
Spina Bifida and Hydrocephalus
Association of Ontario
SB&H

The Facts
Spina Bifida
Spina bifida is the most common permanently
disabling birth defect. It occurs 1 in 1000
births. Spina bifida is a neural tube defect
that happens when the spine of the baby fails
to close. It occurs in the first four weeks of
pregnancy.
Babies born with spina bifida may have an
opening or lesion on their spine. Because of
this opening, the nerves in the spinal column
may be damaged and not work properly. This
results in varying degrees of paralysis. The
higher the lesion is on the spinal column, the
greater the paralysis. Even with no visible
lesion, there can be accompanying nerve
damage.
There is no cure.
Spina bifida is associated with other health
problems. 85% of individuals with spina bifida
also have hydrocephalus. Urology, orthopedic
and learning difficulties is common, as well as
latex allergies.
Types of Spina Bifida
People who have occulta generally experience
few or no symptoms and often don’t know
they have it. Those with meningocele may
experience minor disabilities however
problems may develop later in life.
Myelomeningocele causes nerve damage and
more severe disabilities.
Lipomyelomeningocele is fatty tissue that
compresses and damage to the nerves of the
spinal cord.
Causes of Spina Bifida
The exact cause of spina bifida is not known.
Research suggests it is a combination of
heredity, nutrition and environmental factors.
Folic acid (a B vitamin) has proven to reduce
the risk of neural tube defects, such as spina
bifida, by 70%. Women of child-bearing age,
who are sexually active, should take a daily
vitamin which contains at least 0.4 mg of folic
acid, three months prior to conception and
during the first 3 months of pregnancy.
Hydrocephalus
Hydrocephalus is the excess accumulation of
cerebral spinal fluid (CSF) that increases
pressure within the brain. If this pressure is not
released, individuals may experience serious
health problems.
Hydrocephalus may be present at birth or may
develop later in life.
Treatment of Hydrocephalus
There is no known way to prevent or cure
hydrocephalus. The most common treatment is
the surgical insertion of a flexible tube (a
shunt) into the brain. The shunt diverts the
flow of CSF away from the head into another
area of the body where it can be absorbed.
Treatment may minimize and in some cases
eliminate the effects of hydrocephalus.
Nickolas’ Story
Nickolas was born on lucky Friday November
13, 2009; he was born with the most severe
form of spina bifida (a myelomeningocele).
Nickolas had his first major surgery when he
was 24 hours old. Surgery fixed and covered
the lesion, but damage to the nerves cannot
be repaired. Nickolas also needed a shunt at 3
weeks old due to hydrocephalus, something
we expected and tried to be prepared for.
Nickolas bounced back from both surgeries
with amazing determination. He is a very
happy baby who takes things in stride and
flashes his dazzling smile at everyone he sees.
Nickolas has brought us such joy. Our lives
changed the day we found out that Nickolas
would be born with spina bifida. I can’t
imagine what life would be like without him,
he makes our family complete. We made it
through the pregnancy not knowing how the
spina bifida affected Nickolas but given a
range of symptoms. The SB&H provided us
with valuable and helpful information about
spina bifida and hydrocephalus during our
pregnancy as well as in the first weeks at the
hospital.
We take each day as it comes and Nickolas
enjoys showing off what he can do! “This is
what Spina Bifida looks like – and he’s
beautiful and able, and joyful.”
Nickolas has challenges ahead of him, he
will need help to walk and learn how to do
things that other children have no problems
with. But with good therapy, a great
attitude and an encouraging family,
Nickolas is ready to face his challenges and
surprise everyone.