April 2012 Official

International Journal of
Childbirth Education
Grief
The official publication of the International Childbirth Education Association
VOLUME 27 NUMBER 2 APRIL 2012
International Childbirth Education

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International Journal of
The official publication of the
International Childbirth Education Association
Managing Editor
Debra Rose Wilson
PhD MSN RN IBCLC AHN-BC CHT
Associate Editor
Amber Roman BS
Assistant to the Editor

Brooke D. Stacey RN MSN
Caitlin Rose Orman BS
Peer Reviewers
Marlis Bruyere, DHA M Ed BA B Ed
Andrew S. Forshee, PhD HS-BCP
Karen S. Ward, PhD RN COI
Angela E. Swieter, RN BSN IBCLC RLC ICPE
Terriann Shell, IBCLC ICCE FILCA
Debbie Weatherspoon, MSN RN CRNA
Joy Magness, PhD APRN-BC Perinatal Nurse-BC
Debbie Sullivan, PhD MSN RN CNE
Renece Waller-Wise, MSN CNS CLC LCCE CNL
Kathy Zimmerman, MSN FNP-BC AHN-BC
Maria A. Revell, DSN RN COI
Cathy Cooper, EdD MSN RN CNE
Janice F. Harris, MSN RN
Brandi Lindsey, RN MSN CPNP
Cover Photography
David C. Foster
Middle Tennessee State University
Graphic Designer
Laura Comer
Articles herein express the opinion of the author.

ICEA welcomes manuscripts, artwork, and photographs, which will be returned upon request when
accompanied by a self-addressed, stamped envelope.
Copy deadlines are February 1, May 1, August 1, and
October 1. Articles, correspondence, and letters to the
editor should be addressed to the Managing Editor.
The International Journal of Childbirth Education
(ISSN:0887-8625) includes columns, announcements, and peer-reviewed articles. This journal is
published quarterly and is the official publication of
the International Childbirth Education Association
(ICEA), Inc. Annual subscriptions to the hard copy
of the ICEA Journal are $29.95 for ICEA members
and $59.95 for non-members. The digital copy of the
journal (pdf) is provided exclusively to ICEA members at no-cost.
Advertising (classified, display, or calendar) information is available at www.icea.org. Although
advertising is subject to review, acceptance of an advertisement does not imply ICEA endorsement of the
product or the views expressed.
The International Childbirth Education Association, founded in 1960, unites individuals and groups
who support family-centered maternity care (FCMC)
and believe in freedom to make decisions based
on knowledge of alternatives in family-centered
maternity and newborn care. ICEA is a nonprofit,
primarily volunteer organization that has no ties to
the health care delivery system. ICEA memberships
fees are $75 for individual members (IM). Information available at www.icea.org, or write ICEA, 1500
Sunday Drive, Suite 102, Raleigh, NC 27607 USA.
2012 by ICEA, Inc. Articles may be reprinted
only with written permission of ICEA.
VOLUME 27 NUMBER 2 APRIL 2012

Indexed in the Cumulative Index to Nursing and Allied Health Literature (CINAHL)
Columns
From the Editor Grief by Debra Rose Wilson, PhD MSN RN IBCLC AHN-BC............................ 4
From the President On Grief
by Denise Wheatley, ICEA CE DONA Postnatal Educator IAT IBCLC.................................... 5
From the Executive Director A Helping HandMentoring
by David Feild, Executive Director......................................................................................... 6
Birthing Change Providing Hope and Healing for Parents of Angel Babies
by Amber Roman, BS............................................................................................................ 7
Meet the Board Loss by Terriann Shell, IBCLC ICCE FILCA....................................................... 8
Guest Editorial With Hope by Cathi Lammert, RN.................................................................. 9
Features
The Grief of Caring: Self Care in Helping Grieving Parents of Stillbirth

by Lee M. Stadtlander, PhD................................................................................................. 10
A Model for the Dynamics of Bereavement Caregiving
by Meghan Cholette, MsCN PhDc RN and Sheila M. Gephart, BS PhD RN......................... 14
Sharing Losses Online: Do Internet Support Groups Benefit the Bereaved?
by Elizabeth A. Pector, MD.................................................................................................. 19
Childbirth Education for Parents Receiving Perinatal Palliative Care
by Kathie Kobler, MS APN PCNS-BC CHPPN, Rana Limbo, PhD RN PMHCNS-BC,
and Cheryl Oakdale, MS RNC-MNN IBCLC LCCE CIMI.................................................... 26
Through the Eyes of a Father: A Perinatal Loss
by Meghan E.Cholette RN MScN PhDc............................................................................... 33
Loss and Grief in Twin Pregnancy and Birth
by Jean A. Kollantai............................................................................................................ 39
Childbirth Preparation for Families Pregnant After Loss
by Joann OLeary, PhD MPH, Jane Warland, RM PhD, Lynnda Parker, BSN.......................44
The Reluctance of Women to Respond to Preterm Labor
by Virginia Coleman Smith BSN ICCE RN...........................................................................51
New Baby in a New Country: Supporting Local Immigrant Pregnant Mothers
through Moms Matter
by Sheryl L. Coley, MPH...................................................................................................... 57
Connections Between Prenatal Exposure to Household Toxic Chemicals and Autism?
by Abbie Goldbas, MS Ed JD............................................................................................... 63
The Shifting Landscape of Health and Medicine: Implications for Childbirth Education
by Brian P. Hinote, PhD and Jason Adam Wasserman, PhD.................................................69
Psychoneuroimmunology, Stress, and Pregnancy
by Jennifer B. Crosson, EdS MEd.......................................................................................... 76
In Practice
Practical Considerations in Preparing for a Twin Delivery with Expected Death of One Twin:
Isaac and Liam
by Tammy Ruiz, RN.............................................................................................................80
Using Technology to Connect Families Should We?
by Dr. James Edward Pugh, BSc MBBS and Lori Ives-Baine, RN MN (CPB)......................... 83
Helping Families Create Keepsakes When a Baby Dies
by Rose Carlson, BS............................................................................................................. 86
Incorporating Prenatal Yoga into Childbirth Education Classes
by Molly Remer, MSW, ICCE, ICPFE................................................................................... 92
Book Review
A Gift of Time: Continuing Your Pregnancy When Your Babys Life

is Expected to Be Brief by Amy Kuebelbeck and Deborah L. Davis, PhD
reviewed by Jeanine M. Estrada, MBA................................................................................. 95
The Five Ways We Grieve: Finding Your Personal Path to Healing After
the Loss of a Loved One by Susan A. Berger
reviewed by Molly Remer, MSW ICCE CPFE........................................................................96
Volume 27 Number 2 April 2012 | International Journal of Childbirth Education | 3
The Editors Perspective
Grief
by Debra Rose Wilson, PhD MSN RN IBCLC AHN-BC CHT
This issue is dedicated to the concept of grief. As
a health psychologist I know that grief is more than an
emotional and psychological response to loss. Grief,
sadness, and prolonged depression all influence immune
function, and thus health. Grief increases stress and the
stress/cortisol response further reduces immune and psychological functioning. Unresolved or complicated grief
has been associated with decreased natural killer (NK)
cell activity, which explains an increased incidence of
cancer after a loss. Grieving tends to aggravate pre-existing conditions while impaired sleep patterns can change
circadian rhythms. The immune system cannot replenish
itself without long stretches of stage 3 and 4 pre-REM
sleep. Thus, grief affects health directly.
Grief is a natural response to a loss but there is
something unique about grieving the loss of a pregnancy
or a child. I have been pregnant 13 times. I have one
living child. Joe is now 26 years old and was the result of
my fifth pregnancy. When I consider my own pregnancy
and neonatal losses, I reflect on how I am different
because of those experiences. I am a better nurse; I am
a better human being. I would not want to go through
those terrible losses again, nor would I wish those experiences on anyone, but I am glad they happened. My heart
still tugs when I think of each loss, yet I am keenly aware
and thankful for the gift I have been given. And I can let
those babies go.
I can now look back at some of those times and
smile. When Joey was about seven years old I had just
returned from the hospital after a 16 week pregnancy
loss. Joey knew about the pregnancy and had expressed
sadness with the loss. He asked me, Mom, how many
times have you been pregnant? At that point I was on
my 11th pregnancy. Suddenly I was terrified. What if he
asks what the gender of each pregnancy was? I dont know
that for each one. What if he asks what the names were?
What will he expect of me? The wise mother inside me
calmly said, Just answer his question.
I held his little hands and looked deeply into his
eyes, and answered, Eleven. That was the eleventh preg-
nancy I just lost. His face immediately contorted into a look

of dismay, eyes wide, flickering
with some dreadful emotion that
I could not immediately identify.
Voice shaking, nose wrinkled, the
horror and disgust now evident,
Debra Rose Wilson
he responded incredulous Youve
had sex 11 times? I lowered my
head and pretended to count on my fingers. When I had
composed my face, I lifted my head and calmly responded, Yes. His well considered response was only Eww.
This issue offers many tips for our practice, supporting those who are experiencing loss and grief. When
you read through these scholarly articles packed with
evidence-based tips to improve your practice I encourage you to reflect back on those whose lives you have
touched. Amber Roman will be publishing stories of loss
and healing in the April, May, and June ICEA eNews
newsletter, further extending our exploration of grief.
When babies die you stand close to those grieving. You
provide compassion, care, education, and guidance.
Remember, that to be most effective you need to first
care for yourself. We grieve our own losses and those of
others every time we stand supporting a family as they
heal and transcend their experience. Acknowledge your
own grief and allow time for your own healing. Special
thanks to US organization NationalShare.org (http://
www.nationalshare.org/) who helped connect me to writers and scholars for this issue. Thank you Jeanine Estrada
for your guidance; you are truly appreciated. Special
thanks once again to those who assist me with editing,
careful peer reviewing, and formatting. Readers grab a
box of tissues, and I hope you find this issue helpful for
your practice and personal healing. Before you begin,
look again at this issues cover picture. Can you see the
hopeful sunshine coming through?
Peace,
Debra
editor@icea.org
4 | International Journal of Childbirth Education | Volume 27 Number 2 April 2012
Across the Presidents Desk
On Grief
by Denise Wheatley ICEA CE DONA Postnatal Educator IAT IBCLC, ICEA President
I just returned from walking my dog to visit our new
war memorial here in Pensacola. It is only a block away from
my home. It is a beautiful day 69 degrees, sunny, and a
light breeze. My dog would not be denied her afternoon
walk, but today I went right instead of left as I usually do.
I of course was aware of the planning and watched the
construction of the memorial but had not yet visited this
lovely tribute to the men and women who have fought for
this country.
I know why I had avoided it, as the tears flooded my
eyes and my stomach was hurting from holding back full
sobbing. I do not personally know even one person who has
given their life defending my country. This was not a personal grief, but one felt of the dreams that were lost. Loves
were denied. I am aware of the suffering and the pain of loving so much
you will die for your beliefs. This gift
had been given to me so that one day
I might be free to spend a lovely day
feeling grateful for the benefits their
sacrifices has given to me.
Denise Wheatley
I do not embrace grief. I fear
and dread the agony, emptiness, loneliness, and helplessness. I have however, learned that the healing that comes
from loss is through grief. I hope this issue will give insights
in how to better deal with our own grief and to help others
on their way.
Brief Writers Guidelines for the ICEA Journal

Submitted articles should express an opinion, share
evidence-based practice, disseminate original research,
provide a literature review, share a teaching technique, or
describe an experience. Articles should be in APA format
and include an abstract. The cover page should include
the name of the article, full name and credentials, and a
two to three sentence biography for each author.
In Practice Articles
These articles (minimum 500 words) express an
opinion, share a teaching technique, describe personal
learning of readers, or describe a birth experience. Best
articles will include citations and references. Keep the
content relevant to practitioners and make suggestions
for best practice. Current references are strongly encouraged to support evidence-based thinking or practice.
Accompanying photographs of people and activities
involved will be considered. Examples include In my
opinion, The way I teach, Birth story, Narratives,
and Case Study.
Feature Articles
Authors are asked to focus on the application of
research findings to practice. Both original data-driven
research and literature
reviews (disseminating
published research and
providing suggesInternat
Childbir ional Journal of
th Educ
tions for application)
ation
will be considered.
Articles should be
double spaced, four
to twelve pages in
Grief
length (not including title page,
abstract, or references).
The official
publication
of the Intern
ational Child
birth Education
VOLUME 27
Association
NUMBER
2 APRIL
2012
For more information for authors please

see our website at http://www.icea.org/content/
information-journal-writers
Executive Directors Letter
A Helping HandMentoring
by David Feild, ICEA Executive Director
Mentor: a wise and trusted counselor or teacher; an
influential senior sponsor or supporter
During a recent meeting of the ICEA Board of Directors,
several members lamented the lack of firsthand, personal
help and guidance that was available to members who were
working through the requirements for certification. Although
ICEA staff at the headquarters office was as helpful as possible over the phone and with e-mail questions, the need was
often to speak with a currently practicing childbirth educator
or doula for some practical, real world advice.
One of our Board members, Connie Bach-Jeckell, was
an enthusiastic proponent of the principles of mentoring
proposed by David A. Stoddard in his book The Heart of
Mentoring (http://www.heartofmentoring.com/). Connie
circulated some of Mr. Stoddards ideas to the rest of the
Board and it struck a cord. At the next meeting of the Board
the decision was made to launch a new ICEA mentoring
program and put out the call for qualified mentors. Connie
called Mr. Stoddard and he embraced the idea and graciously gave his permission for ICEA to use some of the concepts
and thoughts from his book in designing the new program.
The website preface for the program reads as follows:
We understand that sometimes our new members, or
newly-enrolled certification candidates, need a little advice, suggestions, guidance, and maybe even an occasional
shoulder to lean on. Even in this day of advanced communication, its possible to feel a bit disconnected when learning and practicing in the birthing field, especially when
face-to-face learning and participation plays such a big
role in becoming a childbirth educator or doula. Your suggestions and comments regarding the need for experienced
educators and doulas passing their wisdom on has played
a large part in our decision to start this program.
It was decided that the ICEA website would be used
to both recruit mentors but also to put members seeking
mentoring in touch with potential mentors. The qualities of
a good mentor were taken from Mr. Stoddards book as:
Effective mentors understand that living is about giving.
Effective mentors see mentoring as a process that requires
perseverance.
Effective mentors open their world to their mentoring
partners
Effective mentors help mentoring partners align passion
and work.
Effective mentors are comforters who share the load.
Effective mentors help turn personal values into practice.

Effective mentors model character.
Effective mentors affirm the value
of spirituality.
Effective mentors recognize that
Mentoring + Reproduction =
Legacy.
David Feild
Effective mentors go for it!
Think you might make a good mentor? Maybe consider
signing up at the ICEA website: http://www.icea.org/content/
mentorshipsignup. The Board also offered a set of guidelines for
establishing and maintaining a mentoring relationship. Complete details can be found at the ICEA website (http://www.
icea.org/content/icea-mentorship-program), but this is the list:
You meet as long as the mentoring partner keeps coming
back.
You only schedule one meeting at a time.
You can end before you start.
Like-mindedness or like-heartedness between mentor and
mentoring partner is essential.
Mentors choose their partners, not vice versa.
Meetings should become less frequent over time.
An e-mail message to all ICEA members was sent out
announcing the program and the response was immediately
positive. Within a few days, over 30 members had volunteered to become mentors. Board members are now helping
to organize these names onto a list that will be placed on
the website. After the list is posted (the website location currently is marked as coming soon: http://icea.org/content/
find-mentor), members will be able to go on-line and seek a
mentor near them. We hope this will have happened by the
time this column is published.
Mentoring is an important element in a variety of settings and institutions. Big Brother and Big Sisters programs
are good examples of mentoring relationships in a volunteer
setting. Mentoring is common in educational settings, generally between instructors and students, as well as within the
administrative organization. Mentoring is a core component
of business leadership and organizational behavior in general.
We hope to be able to subsequently report that the
program has been well received and is functioning well. We
will try to get some firsthand reports from both mentors and
mentees to share with you after a few months in operation.
Until then, the Board will work to enhance the program as it
unfolds and feedback is received.
Birthing Change
Providing Hope and Healing

for Parents of Angel Babies
by Amber Roman BS
Maternal and infant care is a field of extremes; the highs
of discovering new conception, experiencing pregnancy, and
giving birth are breathtaking and miraculous in their excitement. But the lows of miscarriage, still birth, prematurity and
unexpected outcomes are devastating; the grief surrounding
perinatal mortality and morbidity are also breathtakingit
knocks the wind right out of parents, friends, family, and
caregivers. I have often said that one of the reasons I dont
want to be a midwife is this extremity of emotion in birth;
when its good its amazing, but when its bad, it can be
traumatizing and debilitating. I am awed by the courage of
midwives, doctors, and nurses who return to the field after
the traumatic ending to a birthto be able to trust birth,
physiology, and nature after that must be incredibly difficult.
Perhaps even more awe-inspiring, though, are the midwives, doctors, and nurses who provide continuing, palliative
care after such an event. To not only walk a mother and father
through such an event, but to walk them to the other side of
it and beyond it takes intense strength, courage, and training.
When we think of sad or unexpected birth outcomes and
palliative care, I think many of us imagine that the maternal
care staff has guided the family through something like the
discovery of anencephaly, the sudden death of a baby in
utero, or an unexpected loss shortly after
birth. But among these complications
and outcomes is one that at least 20% of
the female, childbearing population has
experiencedmiscarriage. It is estimated
that perhaps somewhere around 40-50%
of pregnancies end in miscarriage because
it is such a difficult complication to track,
prevent, and gaugemiscarriage does not
discriminate and cannot be predicted in
most circumstances. So what are palliative
care teams in hospitals, birth centers, and
womens care practices doing to care for
women experiencing this very common end to pregnancy?
For each woman who experiences miscarriage, it is a
very traumatic and very personal experience. It is the end
of a dream, and one that often has very little memory to
itsometimes the heartbeat was never heard, and perhaps a
vague ultrasound picture is all there is to prove the pregnancy
ever existed. Is it possible that caregivers can become immune to the frequency of miscarriage and fail to provide the
support and empathy necessary to help each patient through
the grieving process? What are we as

caregivers doing to help these women
grieve, remember, and move forward?
In an effort to better understand
the process of healing after a miscarriage, I started to research the grief
programs my own local hospitals have
in place for miscarriages. I learned
Amber Roman
of a hospital in my hometown that
provides a lasting memorial to all the
angel babies born to women here. At Sacred Heart Hospital
in Pensacola, Florida, the palliative care team at the Nemours
Women and Childrens hospital is comprised of a bereavement committee of nurses who work with patients. They
stock a closet full of memorial items for parents to take home
with them, they record and follow patient wishes and do follow up calls at predetermined intervals after the parents leave
the hospital. But one of the things that parents of miscarried
babies dont typically have is a funeral, or physical site of the
babys burial. Families grieving the loss of a loved one often
find closure and comfort in visiting a burial place or headstone memorializing their loved onesomething that parents
who have lost a baby through miscarriage should also have.
The team at Sacred Heart has erected a
memorial statue in one of our local cemeteries called the Angel of Hope statue as a
physical place of remembrance for these
children. Patterned after several other similar
statues in other cities, the Angel of Hope
gives parents a place to hold a memorial
service or baby-naming service, visit on
important days such as birth or due dates,
and grieve if needed. The support group
for perinatal loss at Sacred Heart also holds
candlelight vigils at the foot of the Angel
of Hope on important days to celebrate the
lives of all these babies with their parents, providing healing
fellowship.
It is my hope that the hospitals and birth centers in your
area have a program that assesses and meets palliative needs
on an in-depth basis. I would encourage you to reach out
and find (or start!) these programs so that in a moment of
griefperhaps at the bedside of a mother who has just lost
her babyyou can continue to confidently provide resources
to the mothers and fathers for whom you care.
Meet the Board
Loss
by Terriann Shell, IBCLC ICCE FILCA
Terriann Shell represents us on the ICEA board of directors and
chairs the Lactation Advisory Committee and is from Big City
Alaska.
Recently I had the misfortune of having two women
who were close to me experience a pregnancy loss within
the same week. Both were about 11 weeks of pregnancy. I
had not even thought about this in quite some time, but
these women were asking *ME* for answers. Neither of these
mothers had any clue what to expect beforehand and worst
of all to me, although Ive birthed many babies and teach
childbirth education, I did not know what to tell them or
how to help either!
When these mothers suspected trouble, they call their
health care providers who did not feel the need to see
them; there was nothing they could do this early in the
pregnancy. Both women had subsequently gone into the
ER to see what was happening and were sent home without
answers. They were given no information on what to expect.
Both gave birth, unmedicated in their own homes without
someone who knew how to help. I was surprised that both
women, who each had two previous, unmedicated births,
described the process as more painful than having a full term
baby! Afterward, the health care providers did not suggest a
visit until one month later. They gave no instructions on after
care. The women were left with grief, pain, some physical
problems, and lots of questions.
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It doesnt matter how long a

woman knows she is pregnant; to
learn you are experiencing loss of a
pregnancy is heartbreaking. I remember a woman who found out in the
ER that she had been pregnant and
was losing the baby. She grieved for
Terriann Shell
months (or more). Even when mothers have not felt the movement of the baby, they still grieve.
They grieve for the loss of dreams, the loss of what could
have been. How do you tell the family and friends about it?
Sometimes family and friends respond, You can have another baby, or There was probably something wrong with
the fetus anyway, trying to be helpful. These are ultimately
hurtful comments in the womans eyes. Sometimes, the
people around them arent aware of the loss, The family may
have not shared the blessed new and are not yet showing.
The woman grieves alone, in silence. Partners grieve too,
though their grief may be forgotten. They grieve differently
than mothers or at different stages. With early pregnancy
loss there are no locks of hair, no tiny footprints, no precious
pictures for the parents to hold. Nothing. Some parts of the
world have no resources for support of a pregnancy loss, and
this is one area where the best support comes face-to-face,
heart-to-heart.
There is little printed information available about what
to expect while the loss is occurring. Many mothers do not
want to take pain medication, just in case. They dont want
to give up on their pregnancy. They also have no idea how
painful the process will it be or how long it will take. Tough
decisions have to be made by those unprepared and possibly
in a state of shock, such as what to do with the remains.
What are the warning signs that indicate something is going
wrong?
More could be done to help women through this sad
experience. It would be such a wonderful service to train
pregnancy loss doulas who can help a woman through the
process, sit by her side and be there to offer support and resources afterward. This would be a special person and would
require particular education. Until then, it is up to us to be
prepared to offer information and support to those in need.
Guest Editorial
With Hope
by Cathi Lammert, RN
This past weekend, our Share staff held the biannual
Sharing and Caring perinatal bereavement training for professionals and parent advocates. The weekend was filled with
in-depth information on many specific topics of caregiving
from the professionals on our training team. I always begin
the training with a pictorial reflection of the evolution of the
perinatal loss support movement. There usually are no dry
eyes among our participants.
My first slide is of Lucy, an acquaintance who came
to visit me a few years ago. Before sharing her story with
me, Lucy had silently struggled for over 40 years with the
heartache of not being able to memorialize her baby who
had died mid-pregnancy in 1960. She had no place to go
to grieve and was not sure where her baby was. Together we
determined a way to acknowledge her baby by dedicating a
memorial brick at the Angel of Hope Monument. Her entire
family came for the brick dedication. After the ceremony,
Lucy rushed to me and was smiling through her tears, stating
Cathi, I now have peace in my heart.
The next several slides of my presentation address the
beginnings of the perinatal bereavement movement in the
late 1970s. Sister Jane Marie Lamb, OSF, began Share Pregnancy and Infant Loss Support, Inc. thirty-five years ago due
to the request of one mother struggling with pre-eclampsia
who delivered a stillborn baby then lapsed into a coma for a
few days. When she awoke, her first questions were Where
is my baby? Did you take pictures? Sr. Jane Marie answered
that the baby had already been buried and that no photographs had been taken, which was the accepted standard of
care back then. Many of the younger attendees at our training are surprised to learn that this practice was a protective
one and that families were not given opportunities to spend
time with or memorialize their babies.
My slides then move into the many memory making
opportunities that developed in the beginning years of this
movement. I notice more tears flow as many participants
in the room are grateful they had these choices when their
losses occurred. I also noticed that a few in attendance did
not have these opportunities, and they tell me they fell
through the cracksthis makes me hurt.
The power point then moves into sharing and acknowledging the numerous partners of professional organizations
and specific foundations who have furthered the perinatal
bereavement cause not just in the US

but internationally. The participants
share they are enlightened by the
amount of devotion, interest and care
for the bereaved experiencing a loss
these organizations have provided.
I feel blessed to know most of those
Cathi Lammert
who lead these organizations. My
heart feels a wow as this movement has come a long way due
to their efforts.
The next round of slides reflects the importance of
choice at the time of loss and shows many pictures of actual
memory making opportunities that bereaved families have
today. These images include choices that encompass all
perinatal losses, including early pregnancy losses. Yes, tears
stream down faces, including mine, as these images are profound. These babies are so beautiful, and most pictures are
from families I have had the privilege of serving.
My final slide is the touching image of Lucy cradling her
brick in her hands. I ask them not to forget her and somehow, I believe they will not perhaps you will not either
I am so grateful to ICEA and Debra for devoting this issue
to the perinatal bereavement issues. I applaud the incredible
writers of the informative, evidence based, and well written
perinatal bereavement articles.
It saddens all of us to learn of Lucy stories, and I think
we know this lack of support should not be happening
in 2012, thirty-five years later since the inception of the
perinatal loss movement. This edition may tug at your heart
and provoke some tears, yet we hope this material will bring
some enlightened suggestions to support your practices.
Together we can widen the circle of compassion! Thank you
for this wonderful opportunity.
With hope,
Cathi Lammert, RN
Executive Director, Share Pregnancy and
Infant Loss, Inc.
www.nationalshare.org
President, Pregnancy and Infant Death (PLIDA)
www.plida.org
Feature Articles
The Grief of Caring:
Self Care in Helping Grieving

Parents of Stillbirth
by Lee M. Stadtlander, PhD
Keywords: stillbirth, self-care, health professionals, grief
Stillbirth is defined as the intrauterine death and subsequent delivery of a developing infant that occurs beyond
20 completed weeks of gestation (A loss prior to 20 weeks is
termed a miscarriage or pregnancy loss; National Stillbirth
Society, 2011). More children die as a result of stillbirth than
all other causes of infant deaths combined (Ananth, Shilang,
Kinzler, & Kramer, 2005; National Institute of Health, 2010);
the National Institute of Health (2010) estimates that one
in 200 pregnancies result in stillbirth. Historically, minority
groups have been over-represented in both fetal and infant
mortality rates. The rates, measured per 1,000 live births,
have remained between 20-30 for African Americans, 30-35
for Native Americans, and 10-15 for Caucasians (Cacciatore
& Bushfield, 2007; MacDorman & Kirmeyer, 2009). Despite
the frequency of stillbirth, it is a loss that is frequently unacknowledged and unsupported by family, friends, and health
professionals. Further, for each parents loss are child birth
professionals who must assist the parents in their grief but

must also cope with their own sense of loss and grief.
The Professionals Grief

In a professional child birth environment it is inevitable
that on occasion a stillbirth will occur. When the professional has come to know and share the pregnancy with the
couple, it is normal to feel a sense of grief, loss, and powerlessness when the situation arises (Leff, 1987). Coping with
the parents pain may be emotionally difficult; a common response is to withdraw from the parents pain and the professionals own emotions that arise. However, such withdrawal
results in a communication barrier between the professional
and the grieving parents and deprives the professional of
the opportunity to raise his or her own self-esteem and gain
the healing that occurs with helping the couple through the
crisis. This article examines some self-care measures to help
the professional to cope, which in turn allows him or her to
provide supportive care to the grieving parents.
Kathy Zimmerman APSU
Abstract: The National Institute of Health

estimates that one in 200 pregnancies
results in stillbirth. For each parents
loss of a child to stillbirth are child birth
professionals who must assist the parents
in their grief but also cope with their own
sense of loss and grief. This article examines some self-care measures to help the
child birth professional to cope with a
stillborn birth, which in turn allows them
to provide caring and ongoing support to
the grieving parents.
continued on next page
The Grief of Caring

continued from previous page
For the Parents Healing

First, the child birth professional must be there for the
parents, which will in turn ease the professionals grief and
feelings of loss. Give the family time alone with the child,
and encourage photos to be taken immediately after birth,
so the skin color is as natural as possible (Rdestad, 1999).
For many families, pictures taken holding their baby are later
cherished as a memento of a sad, but significant, time in
their life. Taking photos with siblings and family members
holding the baby is helpful to most families (National Stillbirth Society, 2011). Encourage keepsakes for the family, such
as a lock of hair, hand and footprints (American Pregnancy
Association, 2011). Some parents find it very healing to write
a good-bye letter and place it with the baby during burial
(Hinton, 2002). Suggest a memorial service for family and
friends and that the parents do something in honor of the
baby, such as planting a tree or making an album of memorabilia. Information regarding a support group for the family
should be given, if local ones are not available, many are
available online (e.g., http://www.silentgrief.com).
For Your Healing

Child birth professionals caring for a woman losing a
child should not abandon the failed mother-to-be and need
to acknowledge the mourning process of the parents (Leff,
1987, p. 113). This is not only important for the parents
but also for the professionals sense of loss and any possible
feelings of guilt. It is important for all concerned that the
professional attend any memorial service for the child and
offer support to the parents. Another method of following
this directive is to:
keep in touch with the parents and remember anniversary dates--a week from the birth, a month from
that date, Mothers Day, Fathers Day, etc. Bringing them
a meal every now and then especially when all the other
mourners have left and they feel alone. This not only helps
them but it helps you to heal. (Susan, Midwifery Today
Community, 2008).
It is also essential to remember that the parents grief
will not be quickly resolved, all you can do is accompany
them in their grief: you cannot make it go away. Parkes
(1972) echoes this sentiment when he says:
Pain is inevitable in such a case and cannot be avoided.

It stems from the awareness of both parties that neither
can give the other what he wants. The helper cannot bring
back the person who is dead, and the bereaved person
cannot gratify the helper by seeming helped. (p. 175)
General Strategies for Individual Self Care

When caring for grieving parents and their families,
good professional self-care is critical for at least three reasons. First and most important, child birth professionals owe
it to themselves and their families to lead whole, joyful lives.
Second, the work is draining physically, emotionally
and spiritually. Assisting in grief is a demanding interpersonal
process that requires much energy and focus. Whenever
one attempts to respond to the needs of grieving parents,
chances are small that one can avoid the stress of emotional
involvement. Genuinely caring about people and their families touches the depths of our hearts and souls.
Third, professionals owe it to their clients. Good selfcare is an essential foundation of caring for grieving parents.
Parents can sense the ability to be with them emotionally
and spiritually, as well as physically. Poor self-care results in
distraction from the helping relationship (Wolfelt, 1996).
Good self-care is an essential foundation

of caring for grieving parents
Poor self-care can cause professionals to distance
themselves from peoples pain by trying to act as an expert.
Generally, this is a projection of their own need to stay distant from the pain of others, as well as from their own pain.
The expert mode can cause an irreparable rift between
professional and clients (Wolfelt, 1996).
When the professional must cope with personal and
professional losses, a possible result can be stress and resulting
burnout. The subsections to follow provide a brief overview of
strategies for stress management and burnout prevention.
Stress Management
Prevention is the most effective approach to stress
management. Know your own warning signs and recognize early the need to make adjustments in your work and
personal care strategies. Recognize that frequent illnesses,
fatigue, headaches, and stomach problems are often physical
manifestations of stress.
The Grief of Caring

Effective stress management needs to be a daily way of
life. Our bodies and emotions need regular breaks from the
onslaught of demands as well as opportunities to rejuvenate.
Take the time to attend a stress management course or to
review one of the many stress management workbooks to
identify your strengths and weaknesses in coping with stress.
Develop a plan that outlines things that may help you when
you see your particular warning signs of overload (Schoen,
1998).
Be Proactive in Addressing Burnout

Set realistic goals for yourself that will provide you a
sense of accomplishment. Having a positive attitude toward
my client, is a realistic goal; Im going to keep everyone
positive today, is an unrealistic one. Further, assessing your
goals in a less global manner can be helpful. For example, set
goals for each day and establish reasonable expectations for
yourself, your team, and your clients for that day. Acknowledge the successes and reward yourself when something goes
well (Kahn & Saulo, 1994).
The acknowledgement of losses

minimizes the tendency to personalize
or blame others for the distress often
associated with grief.
Childbirth professionals generally have not accidentally
stumbled into their profession. Rather, by nature they tend
to be care-takers in and out of the professional context. Try
to work to acknowledge feelings of helplessness by controlling your over-caring behavior. In other words: surrender. Begin your work with a newfound revelation: You do not have
to be all things to all people at all times (Wolfelt, 1996).
Make sure that you take your breaks at work. Give yourself time away from your clients and do something enjoyable. Sometimes just going off by yourself for a few moments
in your day is a healing relief from the intense interaction of
your work.
Take time in your life for rest and relaxation. Do things
you enjoy sports, hobbies, art, music, being with friends
and loved ones. It is essential to create a personal life that
nurtures you and balances the demands of your professional
life (Kahn & Saulo, 1994). Create a support network of

friends and supportive colleagues who can be there when
you need them. Look for individuals who are good listeners
and know how to give as well as receive. Be there for them
when they need a shoulder to lean on too. You are in this
together!
Learn and practice calming techniques, such as deepbreathing, yoga, imagery, and meditation, which you can
activate when needed. For example, focusing on your breath
for just a minute or two can help to clear your emotions and
relax you. Form a mental image of a place you feel safe and
relaxed that you can call upon and bring to the forefront
when you need a quick mental vacation.
It is essential to create a personal life

that nurtures you and balances the
demands of your professional life
Acknowledge Loss
Develop ways to acknowledge immediate and cumulative losses. The acknowledgement of losses minimizes the
tendency to personalize or blame others for the distress often
associated with grief. Information about a death needs to
be conveyed sensitively and consistently to all involved staff
members. Maintaining contact with bereaved parents allows
for support for all concerned.
Consider counseling or a support group and work on
unfinished family of origin issues. Attempt to understand
how experiences in your childhood may be impacting your
need to take care of other people (Wolfelt, 1996). Were you
an arbitrator, parent or therapist to your family? Personal
counseling can help you explore these issues as well as career
issues in general. A support group with others dealing with
similar life issues may provide the social support that you
need.
Having a stillborn child can be devastating both for the
parents and for the caring professional. A natural tendency
may be to back away from the pain and the grieving parents;
however, such a response is not in the best interest of either
party. Accompanying the parents in their grief and sharing
in their loss can be healing. Self-care remains an important
element. Recognizing that stress and burnout can be a result
of a caring profession allows for prevention and management
before the grief of caring causes irreparable harm.
The Grief of Caring
National Stillbirth Society. (2011). Still birth awareness: Stamp out S.A.D.S.
Retrieved February 21, 2012, from http://www.stillnomore.org/faq.htm
Parkes, C. M. (1986). Orienteering the caregivers grief. Journal of Palliative

Care, 1, 5 7.
References
Rdestad, I. (1999). When a meeting is also a farewell: Coping with stillbirth or

neonatal death. Edinburgh, Scotland: Books for Midwives Press.
American Pregnancy Association. (2011). Stillbirth: Surviving emotionally.

Retrieved February 21, 2012, from http://www.americanpregnancy.org/
pregnancyloss/sbsurvivingemotionally.html
Worden, J. W. (2008). Grief counseling and grief therapy: A handbook for

the mental health practitioner (4th ed.). New York, NY: Springer Publishing
Company.
Ananth, C., Liu, S., Kinzler, W., & Kramer, M. (2005). Stillbirths in the
United States, 1981-2000: An age, period, and cohort analysis. American
Journal of Public Health, 95(12), 2213-2217.
Schoen, K. (1998). Caring for ourselves: Understanding and minimizing the

stresses of HIV caregiving. In Aronstein, D. M., & Thompson, B. J. (eds.) HIV
and social work: A practitioners guide (pp. 527-536). Binghamton, NY: Harrington Park Press/The Haworth Press.
Cacciatore, J., & Bushfield, S. (2007). Stillbirth: The mothers experience

and implications for improving care. Journal of Social Work in End-of-Life &
Palliative Care, 3(3), 59-79.
Hinton, C. (2001). Planning a Funeral for Your Stillborn Baby. Retrieved
February 21, 2012, from http://www.silentgrief.com/articles/index.cgi?view_
records=1&Category=Miscarriage&ID=83
Kahn, S., & Saulo, M. (1994). Healing yourself: A nurses guide to self-care and
renewal. Albany NY: Delmar Publishing.
Silent Grief website. (2010). You have found help. Retrieved February 11,
2012, from http://www.silentgrief.com
Wolfelt, A. D. (1996). How to care for yourself while you care for the dying and
the bereaved. Fort Collins, CO: Batesville Management Services.
Worden, J. W. (2008). Grief counseling and grief therapy: A handbook for
the mental health practitioner (4th ed.). New York, NY: Springer Publishing
Company.
Leff, P. T. (1987). Here I am, Ma: The emotional impact of pregnancy loss on
parents and health-care professionals. Family Systems Medicine, 5(1), 105-114.
MacDorman, M.F. & Kirmeyer, S. (2009). The challenge of fetal mortality.
NCHS Data Brief, 16. Retrieved from: http://www.cdc.gov/nchs/data/databriefs/db16.pdf
Midwifery Today Community. (2008). Retrieved February 21, 2012, from
http://community.midwiferytoday.com
National Institute of Health. (2010). Research on Miscarriage and Stillbirth.
Retrieved February 21, 2012, from http://www.nichd.nih.gov/womenshealth/research/pregbirth/miscarriage_stillbirth.cfm
Lee Stadtlander is a researcher, professor, and the coordinator of

the Health Psychology program at Walden University. As a clinical health psychologist she has worked and published in the area
of grief counseling and self-care for health professionals coping
with grief.
The ICEA Journal in Hard Copy is Back!

Missing your mailed, hard copy of the ICEA Journal?
Subscriptions are now available for 2012! Members will
continue to have the exclusive benefit of receiving the
digital copy of the journal for free. Annual subscriptions
to your door are $29.95 for Members and $59.95 for NonMembers. Subscribe today! Know a childbirth educator,
doula or midwife? The ICEA Journal makes the perfect
gift! Please be sure to include the name and address of the
person receiving the subscription and a phone number in
case there are questions.
Subscribe online today and start your quarterly subscription to begin receiving printed copies of the International
Journal of Childbirth Education.
ICEA Members take advantage of a discounted rate to
receive all 4 quarterly issues of the ICEA Journal in a collectible, professionally printed, hard copy format.
Reserve your subscription, or one as a gift for a friend,
online using your credit card, or by mailing a check
made payable to:
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Sunday Drive, Suite 102, Raleigh, NC 27607
Journals are printed quarterly.
Only $29.95 for U.S. members, $37.45 International,

$59.95 for non-members for four information-packed
hard-copy issues!
Follow these simple steps to subscribe online:
1. Login to your existing membership account: https://
ecommerce.firstpointmanagementresources.com/ICEA/
PortalTools/Login.cfm
2. Upon successfully logging in, you will see on the left
hand side column, a tab titled Subscriptions. Users
will click the tab and follow instructions all the way to
the checkout.
3. Once payment is submitted, an emailed receipt is sent
to the subscriber detailing their start and end subscription date.
Subscribers are entitled to 4 printed issues of the Journal.
Those who subscribe after January 15 will receive their first
issue with the start date of 4/15/2012.
In addition, free downloadable copies are available to
members with use of a password which will be sent to all
members shortly after release of a current issue.
Members may go to the ICEA Archive and use the password ICEAmember2011 to retrieve archived issues.
A Model for the Dynamics of
Bereavement Caregiving
by Meghan Cholette, MsCN PhDc RN and Sheila M. Gephart, BS PhD RN
Abstract: Each day nurses encounter

patients as they both win health victories and endure traumatic losses. When
families suffer the loss of a child before
delivery or after, nurses, midwives, doulas, and childbirth educators grieve with
them. Perinatal nurses focus their attention on those in need, perhaps to the peril
of their own health. The purpose of this
paper is to highlight the experience(s) of
a practicing perinatal nurse to gain an
understanding of the nature and meaning
of loss and bereavement caring through
the eyes of the caregiver. This case study
revealed an emergent framework of dynamic bereavement caregiving, including
four core stages: Acknowledgement of
loss, disconnecting feelings, grieving and
healing, and new beginnings.
Keywords: perinatal loss, bereavement, grieving, healing, caring
In nursing, traumatic losses such as death are witnessed

everyday. It is vital to explore these occurrences from a nursing perspective to better understand the processes of caring
for grieving families. In the perinatal setting, parents may experience stillbirth, an unexpectedly traumatic delivery, death
of their child during labor, or death in the neonatal period.
In these times, childbirth educators may be approached by
grieving families because they are seen as a safe haven and
parents respect the knowledge and experience of childbirth
educators. Indeed, all nurses working in the perinatal environment are confronted with the challenge to interact with
grieving families in a caring and compassionate way.
Every familys experience of losing a child during pregnancy or in his or her early life is different. While the nurse
attempts to maintain her professional composure, families
appreciate when nurses empathize and grieve with them.
After the baby is born, the family should be given time to
say hello and goodbye to their infant. Once the family is
ready, the nurse can take pictures of the infant, collect a lock
of hair, and dress the infant in clothes or a special blanket
the family has brought. Families who have grieved infants
with deformities particularly appreciate pictures of normally
formed hands and feet, taken in black and white. If families
know in advance of delivery that their child has died or will
die, childbirth educators can offer them anticipatory guidance about managing labor pain and knowing what to expect
when the child is born. The familys wishes for the delivery
can be explored beforehand and should be respected when
at all possible. All caregivers can be empathetic by referring
to the childs first name, using the words, I am so sorry that
your baby died, and avoiding referring to the birth or the
child in cold, distant terms (e.g. referring to the delivery as
extracting the products of conception).
The phenomenon of caring for bereaved families has
been explored in past discourse and several theoretical
frameworks have been developed to describe, explain, and
serve as a guide for the grieving process. Read (2002) lists
examples of theoretical models of grieving that include
Kubler-Ross Stages of Death and Dying, Wordens Tasks of
Mourning, and Stroebe and Schuts Dual Process Model of
Bereavement. Although widely used and recognized, it is
believed that these frameworks do not support or address
what it is like for nurses caring for grieving families. Exploring ways of caring for bereaved families following a perinatal
loss will offer much needed guidance for nurses in caring for
themselves and each other. Thus, the purpose of this literature review, with an exemplar case, is to develop an initial
understanding of the experience and develop a preliminary
substantive theory of caring for bereaved families by exploring the psychosocial processes of grieving and bereavement.

Bereavement caregiving is a process that is grounded
in and carried out within a social context. People shape the
world they live in and assign meaning to their experience
through their interactions and communications between
people (Glaser, 1992). Furthermore, it is believed that there
is a reciprocal relationship between people and their social
environment. According to this perspective, people define
themselves based on social interaction(s), and use symbols to
ascribe meaning to life experiences (Wuest, 2007). Using a
case study approach, the phenomenon of bereavement caregiving was examined to understand one nurses experience
caring for families after they experienced perinatal loss. Case
studies can be used to evaluate a problem or perspective in
depth, using storytelling and sharing lived experiences, thus
allowing one to gain a deeper understanding of caring for
bereaved families and its meaning for those involved. This
in-depth examination of one nurses story is useful, but more
research is needed with larger samples to understand if her
experience describes the common experience of bereavement caregiving.
understood through their dimensions and properties. Strauss

and Corbin define dimensions as, the range along which
general properties of a category vary, giving specification to a
category and variation to the theory (p. 101) and properties
as the, characteristics of a category, the delineation of which
defines and gives meaning (p. 101).
Trustworthiness
Trustworthiness was established by utilizing the four
criteria proposed by Lincoln and Guba (1985); credibility,
dependability, confirmability, and transferability (Polit &
Hungler, 1995; Tuckett, 2005). Credibility was established
through the use of member checks, peer debriefing, persistent observation, keeping audio tape, and field notes.
According to Lincoln (1995) and Tuckett (2005), these are
some techniques used in ensuring credibility is maintained.
Dependability was maintained by allowing others in online
discussions to examine the research methods, documentation, decisions and findings. Additionally, dependability and
confirmability were established by keeping records of data
and field notes. Readers must decide if these findings are
transferable to their unique situation, ones self, or to others
they work with in the perinatal setting.
Results
Example Case
An obstetrical nurse shared her story of caring for
bereaved families. This health care professional is Caucasian
with over thirty years of professional nursing experience.
An in-depth examination of her experience was conducted
with an observation, field note analysis, and an interview.
The interview was tape-recorded and transcribed verbatim.
Open-ended questions were used initially to help identify
any concepts requiring further explanation or exploration.
The interview was set up at a convenient time and was conducted at the participants home as she requested.
Analysis
Information was gathered and analyzed simultaneously.
Throughout the analysis process, categories and their properties were discovered and were used to identify the interrelationships and connections that describe the experience
of bereavement caregiving (Polit & Beck, p. 307). From the
interview, we identified substantive categories made up of
core concepts and grouped them together to form the initial
theoretical framework (Strauss & Corbin, 1998). According to Atieno-Okech and Rubel (2009), categories can be
We generated one substantive, four categorical stage

model, including ten related sub-categories, to depict the
nursing processes of caring for bereaved families (Table 1).
The four stages include: acknowledgement of loss, disconnecting feelings, grieving and healing, and new beginnings (Figure 1).
Caring for grieving families as both opportunity and professional duty was illustrated in each stage and is represented as
an underlying category of each stage. Stage 1 represents the
processes of facing the reality of loss encountered in practice
and the processes of acknowledging the professional duty of
caring when these incidences arise. In Stage 2, Disconnecting
Feelings, the processes of remaining strong and setting aside
personal emotions are illustrated. In Stage 3, the processes
of self-care, utilizing available supports and now recognizing
and accepting emotions are exemplified. Lastly in Stage 4,
the process of recognizing that tomorrow is a new day with
another opportunity for caring is identified.

Table 1. Substantive Categories and Properties

Substantive Categories
Properties
Caring
Opportunity of caring

Duty of caring

- tomorrow is a new dayfor those good days and those that are bad, you just get back to
work because there is always someone else that needs care
- have a job to do
- learn to just do what you have to do
- you have to be there to be the one supporting and caring for these families
Acknowledgement of loss
Facing the reality of loss

Duty of caring

- a reality in this field

- these thing are going to happen
- have a job to do
- in those moments you learnto just do what you have to do
Disconnecting feelings
Remaining strong
Setting aside personal emotions

Duty of caring

- remain strong
- set aside
- process of becoming numb
- turning off your emotional side
- have a job to do
- in those moments you learnto just do what you have to do
Grieving and healing
Self-care
Utilizing available supports
Recognizing and accepting emotions

- reflection
- taking time for yourself
- talking with co-workers
- work through emotions
New beginnings
Tomorrow is a new day

Opportunity of caring
- get back on and keep trying

- tomorrow a new day
- clean slate
- there always someone else that needs care
Figure 1: Emergent Framework of the Dynamics of Bereavement Care Giving

Stage 4:
New beginning
Stage 1:
Acknowledgment of loss
Stage 3:
Grieving and healing
-Facing reality
Stage 2:
Disconnecting feelings
-New day
-Another opportunity
-Accepting emotions
-Self-care
-Utilizing support
-Remaining strong
-Setting aside emotions
Acknowledgment of Loss
Throughout the narrative, the nurse emphasized the
unavoidable reality that nurses are recurrently faced with the
phenomenon of loss and death frequently in practice. She
states, You see the thing is when these things happen you
have to take it sorta with a grain of salt, its a reality in this
fieldthese thing are gonna happen. This is seen as the first
stage in the framework of bereavement caregiving.
Disconnecting Feelings
Disconnecting feelings is the second stage in this model.
The nurse expressed the necessity to set aside her emotions and to remain strong for the families for whom she
provided care. She described a process of becoming numb
and turning off your emotional side over the years as a
defense mechanism in practice. This enabled her to continue
to provide the needed support and care to families grieving
the loss of their child.
The nurse expressed the necessity to

set aside her emotions and to remain
strong for the families for whom she
provided care.
Grieving and Healing
Although the nurse identified emotional mechanisms
of defense in her practice, she related to her own personal
ways of coping and be able to continue to provide needed
care to the grieving families encountered in practice. She
also identified that nurses not only need to acknowledge
their emotions, but must take the time to heal and grieve the
losses they have witnessed. She expressed various self-care
techniques such as reflection, and using the support systems
around her including her work team. As expressed, Its
probably different for everybody but sometimes just talking
with my team helps; just letting it all out. Other times taking
time for yourself to just think and work through what youre
feeling This category set the stage for the subsequent
stage, a New beginning.
New Beginning
Within this stage,
the idealization that
tomorrow brings with it
a new opportunity for
caring and, as the saying
goes, a clean slate was
expressed by the nurse
numerous times. This
stage depicted a form
of resiliency needed by
nurses, to be able to as
the participant states get
back on and keep trying.
Nurses resilience to acknowledge, disconnect, resolve their
emotions and then return to caring for families facing substantial losses is truly a noteworthy and revered characteristic
of nurses.
Discussion
Through this case study the framework of bereavement
dynamics emerged that may assist practicing nurses in providing bereavement care. By describing one nurses experience of caring for grieving families, we have tried to shed
light upon how and what coping mechanism nurses may use
in practice to cope with these traumatic losses. Limitations
of the case study approach include limited transferability to
other perinatal nurses and childbirth educators, a limited
sample size, and the need for more research to confirm
our preliminary findings. Interviewing several nurses and
healthcare professionals from varying social and cultural
backgrounds working in the perinatal setting may allow for
the development of the initial model. Additionally, it may
be that years in practice and the perception of the individual
nurse come between the nurses desire and her ability to
care. Future research is needed to clarify how the number of
years in nursing practice impacts ones ability to disconnect
emotions when caring for bereaved families and if nurses
perception of duty versus opportunity to care in practice
impacts the psychosocial processes of caring in nursing.
Implications for Childbirth Educators

Throughout the interview the nurse revealed not only a
professional duty to care for bereaved families but also that
each new day presents another opportunity to care. This
Jeannie Nicholson

opportunity and duty of caring was a recurrent, underlying
theme within each stage presented. The nurse indicated that
continuing to care for bereaved families was a professional
responsibility by expressing phrases such as have a job to
do, in those moments you learnto just do what you have
to do, you have to be there to be the one supporting and
caring for these families, and tomorrows a new day and for
those good days and those that are bad, you just get back at
it because there is always someone else that needs care. It is
important for any professional working with bereaved families
to understand that although we have a duty to care and we
are expected to be fully present providing quality of care, we
must also understand that caring for ourselves and supporting
one another is essential. Caring for bereaved families does not
come naturally to all. Often times, there is typically a select
few of professionals who are drawn to bereaved families and
who time and time again offer to provide care. However, even
those who feel confident in bereavement care giving need
time, as this nurse describes, to share in those good days.
... although we have a duty to care

and are expected to be fully present ...
we must also understand that caring for
ourselves and supporting one another is
essential.
Everyday, childbirth educators, midwives and perinatal
nurses are challenged with the practice reality of bereavement and loss. As such, it is imperative that we are prepared
to emotionally, spiritually and physically support one another
and the bereaved families we serve. The results of this nurses
testimony highlight the importance of not only acknowledging the difficult experiences and losses when they do occur
but also of the necessity of developing a strong supportive
team, a safe venue to express and share feelings of sorrow
and sadness, and of the importance of setting time aside for
self-care and intrapersonal reflection. Suggestions to facilitate
these processes include incorporating bereavement care training and discussions in annual educational initiatives, providing the opportunity for others to care for bereaved families,
and through developing and fostering a robust debriefing process that is accessible to all members of the healthcare team.
References
Atieno-Okech, J., & Rubel, D. (2009). The experiences of expert group
work supervisors:
An exploratory study. The Journal for Specialists in Group Work, 34(1), 68-89.
Glaser, B. (1992). Basics of grounded theory analysis. In P. Munhalls (Ed.),
Nursing Research: A Qualitative Approach (4th ed.), edited by Munhall, P.
(2007). Sudbury, MA: Jones and Barlett.
Liehr, P., & LoBiondo-Wood, G. (2007). Qualitative approaches to research.
In Nursing Research: Methods and Critical Appraisal for Evidence-based Practice
(6th ed.). St. Louis, MO: Mosby Inc.
Lincoln, Y. (1995). Emerging criteria for qualitative and interpretive research.
Qualitative Inquiry, 3, 275 289.
Polit, D. & Hungler, B. (1999). Nursing research: Principals and methods.
Philadelphia, PA: Lippincott.
Read, S. (2002). Loss and bereavement: A nursing response. Nursing Standard, 16(37), 47 55.
Strauss, A. & Corbin, J. (1998). Basics of qualitative research: Techniques and
procedures for developing grounded theory (2nd ed.). Thousand Oaks, CA:
Sage Publications.
Tuckett, A. (2005). Part II. Rigor in qualitative research: complexities and
solutions. Nurse Researcher, 13(1), 29-42.
Meghan Cholette has worked as both a perinatal nurse and

professional practice leader in Toronto, Ontario. After completing her Bachelor of Science in Nursing and Masters of Science
in Nursing at York University, in 2004 and 2007 respectively,
Meghan is now in the process of completing her doctoral degree
at the University of Arizona with a primary focus of perinatal
nursing and perinatal loss.
Sheila Gephart is a former childbirth educator and has worked
for 15 years in maternal-child settings including neonatal intensive care, post-partum and pediatrics. She is a PhD candidate in
the College of Nursing at the University of Arizona and lives in
Tucson with her family. Her research focuses on improving quality and safety in the care of infants and their families. She has
received training support from the National Institute of Nursing
Research (F31NR012333).
Sharing Losses Online:

Do Internet Support Groups
Benefit the Bereaved?
by Elizabeth A. Pector, MD
Abstract: Internet support groups for loss

of a child are popular. Most users are
young, white, female, and well-educated.
Although research about internet groups
has not shown better health or grief
outcomes, groups empower members to
access information, resources and social
support. Perinatal loss group participants
appreciate convenient, safe online communities to validate grief and discuss
emotions, experiences, and hopes. Limits of groups include misinterpretation,
anger, fraud, and difficulty managing
crises. Social media and memorial sites
offer other means of commemorating the
deceased. Online resources are best used
to supplement local or professional support. Selected resources for perinatal loss
are provided.
Keywords: Perinatal loss, miscarriage, grief, internet, support group
Childbirth educators who work with bereaved parents

will most likely encounter clients who participate in online peer support groups. Online bereavement groups are
popular, outnumbered only by groups dedicated to health
conditions or weight loss. One in ten online groups is for
support of bereaved individuals, and among Yahoo bereavement support groups, 23% are for the death of a child (Van
der Houwen, Stroebe, Schut, Stroebe, & Van den Bout,
2010a). Following a discussion of the demographics, benefits
and risks of online bereavement groups and memorial sites,

this paper offers some guidance on integrating online loss
support with other resources while helping bereaved parents
judge the quality of online loss support communities, and a
listing of trustworthy online perinatal loss support resources.
Who Uses Online Support Groups?

Van der Houwen et al. (2010a) determined that most
users of online mutual bereavement support groups are
North American or European, women, young, and experiencing greater degrees of grief and emotional loneliness
than nonusers. Users of online bereavement groups were less
likely to be religious than nonusers (Van der Houwen et al.,
2010a). Gold et al. surveyed over one thousand users of eighteen online forums for perinatal loss. They found white, welleducated women predominated in online groups, and they
used the sites frequently (2011). In the study by Gold et al.
(2011), African-American women were substantially underrepresented, despite their greater risk of stillbirth. Similarly,
in a study of Facebook memorial sites, Fearon (2011) showed
a striking predominance of whites among those responding
to a questionnaire about memorial site usage, and most were
less than 35 years old. There are suggestions that individuals who make use of online support are more depressed
than others (Pector & Hsiung, 2011; Van der Houwen et al.,
2010a). Van der Houwen et al. (2010a) found that bereaved
support-group participants tended to use online peer support as a supplement to professional and social resources in
coping with their losses
Support groups for bereaved parents seem to be overrepresented among online bereavement groups, given that
the death of a child is rare compared to the death of an adult
relative. While researchers have not examined the reasons
Sharing Losses Online

for greater prevalence of child-loss groups, Van der Houwen
and colleagues (2010a) theorized the greater number of
groups for loss of a child could be explained by the nature
of a childs death, often claimed to be the worst type of loss
that can occur. Alternatively, compared to individuals who
lose an adult parent or life partner, bereaved parents might
be less likely to find peers with a similar loss history among
their usual social contacts, or they might turn to online
support when their typical social network is less forthcoming with support over a prolonged period of grief (Van der
Houwen et al., 2010a).
Do Online Support Groups Improve Physical or

Mental Health?
Anecdotal evidencethe weakest form of evidence-would seem to answer an emphatic Yes! Consider this
message from a recently bereaved mother:
I am extremely grateful and thankful that [moderator] put
together a support group that saved my lifeThere is NO
way, none whatsoever that I could have gone through this
process without you. You gave me hope; you were my light
when I was lost in the darkness. You are all simply amazing, beautiful people angels that enlighten the way.
Alone with loss at 4 AM, she received a reply from the
moderator within hours, and in ensuing days received other
helpful replies. The bereaved woman credits the group with
moving her from suicidal thinking to the start of the healing
process.
However, formal research related to physical or mental
health outcomes in users of online groups has been disappointing (Eysenbach, 2004; Gold et al., 2011; Van der
Houwen et al., 2010a). The quality of research pertaining
to online support groups has been poor, with studies often
lacking control groups or focusing on participants subjective
impressions (Van der Houwen et al., 2010a). When comparing current users of groups to nonusers, Van der Houwen
and colleagues did not find any difference in mental health
or grief measures over a three-month time period (Van der
Houwen, Schut, Van den Bout, Stroebe, & Stroebe, 2010b).
The low-quality research and limited measurable benefit
in online groups echoes the results of Forte and colleagues
systematic review of face-to-face bereavement support
interventions (Forte et al., 2004). The reviewers found a wide

variety of interventions offered in reported studies of mutual
aid or professionally-led support groups. Some trials showed
positive effects, while others did not reveal a benefit of group
support or counseling on grief. As with research related to
online support groups, many studies of face-to-face interventions did not incorporate control groups. Since grief tends to
improve over time without assistance, control groups are essential to show that an intervention for grief has true benefit
beyond the spontaneous improvement expected over time
(Forte et al., 2004).
What Psychological Benefits Do Bereaved

Individuals Perceive in Online Groups?
All effectively functioning groups tend
to foster hope, universality, cohesiveness,
catharsis, information attainment,
interpersonal learning, and helping
others
Given the dearth of high-quality evidence of health
benefits for users of online groups, why do so many bereaved
parents use them? Several lines of inquiry, including psychological theories, studies of many types of online support
groups, and focused studies of bereaved parents in online
groups, suggest the major benefits of support group participation are psychological, rather than measurable change in
the grief process.
All effectively functioning groups tend to foster a
therapeutic process. Irving Yalom, who studied both psychotherapy groups and self-help group process, identified major
therapeutic factors operative in groups. These include hope,
universality, cohesiveness, catharsis, information, interpersonal learning, and helping others (Yalom & Leszcz, 2005).
These factors occur as effectively online as in face-to-face
settings (Pector & Hsiung, 2011).
Unique aspects of online groups include 24/7 availability, the effect of writing, and the option of anonymity.
Bereavement support may occur in scheduled chats, but it
is more popular in asynchronous forums or email lists, with
participants posting or reading whenever it is convenient to
them (Van der Houwen et al., 2010a). As shown in numerous
past studies, writing about distressing events, thoughts and

emotions can be therapeutic, decreasing negative emotions
such as loneliness and increasing positive emotions (Barak,
Boniel-Nissim, & Suler, 2008; Van der Houwen et al.,
2010b). Anonymity induces a well-described disinhibition
effect, which promotes rapid intimacy and group bonding through self-disclosure of deeply personal experiences,
thoughts and feelings (Barak et al., 2008). Participants in an
anonymous group need not fear rejection based on their status, appearance or vocal qualities (Pector & Hsiung, 2011).
All of these factors combine to facilitate support for rare
conditions and discussion of sensitive matters.
Online groups promote individual empowerment: ones
ability to make decisions, think critically and access resources. Support groups emphasize reliance on self and peers,
and promote a sense of competence, self-determination in
decision-making, and social engagement through helping
and identifying with others (Barak et al., 2008). Users gain
empowerment through the psychological benefits of online
groups, which include emotional support, recognition, competence, confidence, control, information, independence,
social well-being, and improved feelings such as optimism
and acceptance (Barak et al., 2008; Van Uden-Kraan et al.,
2008). Van Uden-Kraan and colleagues (2008), in surveying
members of online groups for health conditions, found that
becoming better informed and improving social well-being
were the strongest empowering outcomes of group participation. Several other studies of online health-related groups
report an increase in social and emotional support measures
and a decrease in isolation, stress, depression, pain and
health care utilization (Gold et al., 2011). Lurkers (people
who read but do not post) obtain benefit from reading messages, but their benefit may be less than that of people who
actively participate by posting (Pector & Hsiung, 2011; Van
Uden-Kraan et al., 2008).
Two English-language studies have directly evaluated
use of online support groups by perinatally bereaved parents.
In 2000 to 2001, Capitulo (2004) conducted a three-month
ethnographic survey of an online perinatal loss support
group with 87 members from North America, Europe, and
Asia. Of the 87 members, 30 actively posted to the list during the study while the rest lurked. Capitulo (2004) found
a central theme of shared metamorphosis, in which each
bereaved participant transformed her identity to mommy of
an angel. Participants joined in search of understanding and
emotional support. Hugs in parentheses, e.g. (((Hugs))), were

frequently offered to express support, comfort and intimacy.
Grief topics included symptoms and emotions, coping, and
the influence of time. Other themes of discussion included
holidays, memories, subsequent pregnancy, symbols (primarily angels, but also butterflies, dragonflies, hearts, stars or
candles), spirituality, support from group members, and family relationships. Based on messages posted during the course
of the study, Capitulo (2004) compiled a list of Dos and
Donts for a mother experiencing perinatal loss, demonstrating the potential of a group to help others through shared
experiences.
More recently, Gold and colleagues (2011) surveyed
members of 18 perinatal bereavement support forums online,
with respondents from 18 countries, most from the United
States. More than half of their respondents had suffered a
loss after 20 weeks gestation. Some women expressed feeling
safer online, although some feared they could be identified
through their messages. Privacy was important, especially for
some women who had terminated a pregnancy. Nevertheless,
about one-third of respondents reported they had revealed
personal information in online groups. One major theme,
expressed by 78% of respondents, was the recognition they
were not alone in grief, that others had experienced similar
events and emotions. Another important theme was validation and safety in discussing their deceased children and
birth experiences. Survey respondents appreciated 24/7 convenience of internet access to support, and some felt it was
easier to write about emotional subjects than to speak with
others face-to-face. Regarding social support, respondents
described a strong sense of support, comfort and community.
A small number arranged face-to-face meetings with other
online group members. Other themes were each mentioned
by several members, including hope for the future, learning
new information, and being able to help others (Gold et al.,
2011).
What Are the Limits of Online Groups?

First, the distinction between self-help and professional
mental health treatment must be acknowledged. Peer support groups mainly aim to offer relief and improved feelings,
whereas professional treatment aims to achieve therapeutic
change in emotions, cognition, or behaviors. Participants can
join or depart at any time from a support group, while group
psychotherapy is generally time-limited and asks commitment from participants for the entire period of treatment.

Peer support is not meant to replace professional therapy,
but it can provide powerful emotional support to enhance
the benefit of other forms of treatment (Barak et al., 2008).
The work of Van der Houwen and colleagues (2010a) suggests that online bereavement groups are used appropriately,
as an adjunct to professional and social support.
Secondly, there are many differences between face-toface and online peer support groups. Communication is
limited in an anonymous online setting. Without nonverbal communication, which may comprise the majority of
face-to-face communication, comments may be more easily
misinterpreted. Additionally, a participant may form an
inaccurate mental image of other members of the support
community (Barak et al., 2008). The tendency to objectify
unseen others in an online support group can result in anger,
insults and hurt feelings (Pector & Hsiung, 2011). Anonymity
also increases the possibility for fraud, including fakers who
invent a bereavement story and infiltrate a loss support group
for financial, entertainment or other purposes, and trolls who
post abusive messages (Stroebe et al., 2008). Theft of photos,
identity theft, harassment and cyberstalking have been more
rarely seen (Pector & Hsiung, 2011). As with face-to-face
groups, a participant might become distressed by exposure to
the sad accounts of others, including loss stories or grief that
the member judges to be much more severe than her own.
Finally, in an online setting, the potential for crisis intervention is limited (Pector & Hsiung, 2011; Stroebe et al., 2008).
In a recent review of bereavement-related internet interventions, Stroebe et al. (2008) note the lack of high-quality,
controlled studies to confirm benefits or harms related
to either self-help or professional assistance online. They
indicate support can be provided for emotional, informational and appraisal (self-evaluation of well-being) functions.
However, no studies have shown whether such support is
more helpful than not receiving support. Another note of
caution was sounded by Hollander, who wrote a decade ago
about online support for people who survived a loved ones
suicide. There is a danger in becoming too centered on grief
and forgetting the remainder of life and the living. To the
extent that we, as a society, isolate the grieving into pockets of exclusion we create precarious, alienated and angry
subcultures (Hollander, 2001.) In this vein, the authors cite
evidence that persons with high levels of rumination cope
less well with bereavement over time (Stroebe et al., 2008).
What Are the Signs of a Well-Functioning, HighQuality Online Group?

In brief, a good group is nonjudgmental, active, and
caring with a sense of community and helpful support from
multiple participants. Moderators encourage diversity of
opinions and enforce clear guidelines that ensure a comfortable experience for as many as possible, and they act quietly
outside the group to discipline members who violate guidelines that prohibit fraud, hurtful posts or harassment of other
members (Pector & Hsiung, 2011). The number of members
and number of monthly posts can be viewed at some sites.
A healthy group has a stable core membership with some
departing and others joining, and frequent enough posts to
result in active discussions.
Due to concerns about privacy, which were important
to participants in Gold et al.s study, bereaved parents can be
encouraged to seek private, closed forums that require administrator approval of membership. Ideally, group posts by
a participant will not be accessible by general internet search,
and will not lead to easy identification of participants. Gold
and colleagues (2011) respondents felt that a moderated
group led by an effective facilitator is preferable. The tone of
interaction in groups is influenced by the quality of moderation (Pector & Hsiung, 2011). Finally, the ultimate goal of a
healthy group is the participants successful reintegration into
society and avoidance of negative outcomes such as isolation or suicidal ideation (Gold et al., 2011; Pector & Hsiung
2011).
Are Online Memorial Sites Helpful?

Memorial sites may provide an outlet for commemoration where other ceremonies or memorials do not exist or
are inadequate. They may also offer a remedy for disenfranchised grief (Stroebe et al., 2008). For bereaved parents who
have few tangible mementos of their children, images such
as angels or ultrasound pictures may serve to make the deceased child seem more real (Capitulo, 2004; Keane, 2009).
However, there are limits to these substitutes; angels are not
tangible, and ultrasound pictures are static biological records
of a single point in time (Keane, 2009).
Memorial sites may enable the bereaved to continue the
bond with the deceased person in a comforting way, often
for years after the death, and with reference to the decedent
looking over the individual writing on the site (Brubaker &
Vertesi, 2010; Castro and Gonzalez, 2010; DeGroot, 2009;

Stroebe et al., 2008). An analysis of writing by mothers and
fathers who posted at Compassionate Friends memorial
sites revealed little gender difference in the parents messages, which often were written to their deceased children.
Mothers posted more than fathers, and more messages were
written about sons than about daughters (Musambira &
Hastings, 2006-2007). Stroebe et al. (2008) acknowledge
the possibility that intense engagement with memorial sites
could promote prolonged, maladaptive, ruminative grief and
difficulty moving on after the bereavement event. Further
research is needed to clarify the potential benefits or harms
of such sites.
How Do the Bereaved Use Social Media Such as

Facebook?
Anecdotal evidence from a professional acquaintance
who experienced a stillbirth suggests that friends on social
media sites can constitute a very powerful support group
for a bereaved parent. This bereaved mother commented
soon after her loss that she had experienced a very public
pregnancy, with frequent Facebook posts of her growing
figure during pregnancy and photos of their nursery. It unfortunately transformed into a very public loss, and she received
hundreds of messages of sympathy and support. Facebook
was my support group, along with family and friends. This
woman did not feel the need to attend a traditional inperson support group, in part because of the outpouring of
supportive messages from her online network.
Administrators of several online groups or boards for
loss support have advised the author that participation in
these forums has decreased as users migrate to Facebook and
start corresponding groups there. Facebook groups may be
open (posts to the group are visible on the users wall or
home page), private (with membership in the group, but not
posts, visible on a members Facebook wall) or secret (neither
membership nor posts visible on the wall) (Facebook, 2011).
Photos are often shared, and group documents can be created. Anonymity is not feasible, and a user can learn quite
a bit about other participants by adding them as friends on
Facebook. This greater transparency may limit the potential
for fraud or deception, but participants cannot easily control
how much of their non-bereavement life is visible to group
members who are friends. The same cautions that apply to
more traditional online groups are also operative here.
Social media memorial sites, such as those on Facebook, are relatively new. Memorial groups may be restricted
to those who knew the deceased, or open to the general
public. Most memorial groups include information about the
deceased, pictures, prayers and comments (Fearon, 2011).
Memorial messages include expressions of shock, spirituality,
lamentations, memory sharing, life updates, photos, prose
contributions, relational expressions of love and missing the
deceased, and comments related to other memorial-group
members (DeGroot, 2009; Fearon, 2011). Fearons analysis
of memorial-site messages revealed six themes: memorialization, connection with others, connection with the deceased,
personal mourning, a culture of technology, and other
concerns (Fearon, 2011). Communications, and the apparent relationship, can be similar to the status prior to death
(DeGroot, 2009). In addition, memorial sites may include
comments from people who did not personally know the
deceased, termed Emotional Rubberneckers (DeGroot,
2009). Spam and inappropriate comments are occasionally
seen (Fearon, 2011).
Maureen Boyle, founder of Mothers of SuperTwins,
characterizes social media as the Wild West of support,
unstructured, untrained, with immediate 24/7 connection
and feedback (Pector & Hsiung, 2011). There is reason for
concern about privacy, which we have seen is important to
bereaved parents (Gold et al., 2011). Similar to what is seen
in other types of online support groups, abuse of online
social media memorial sites by trolls has occurred (Phillips,
2011). While this has been described mainly in connection
with high-profile media coverage of teenage or other deaths,
caution must be maintained for the possibility of abuse in
relation to perinatal loss.
Childbirth educators are ideally

positioned to coordinate support for
bereaved families after pregnancy or
infant loss.
Where Can Perinatal Educators Refer Their
Bereaved Clients for Online Support?
Geller and colleagues (2006) compiled a listing of helpful web-based resources, variously including education, individual or group support, and links to local or other online
support resources. Building on their efforts, the author procontinued on next page

vides updates and adds infertility, multiple-birth and SIDS
resources in Table 1. Some resources are backed by sizable
organizations, while others were started and are maintained
by just one person. Perinatal educators and caregivers can
confirm the appropriateness and current availability of these
resources before recommending them.
When offering online bereavement resources, educators
can project cautious encouragement. Current knowledge
is summarized below. Online grief support groups, memo-
rial and information sites are popular. These support systems

do not shorten or lessen grief, but they help people feel less
alone. They give information, support, and confidence to help
coping. This technology is best used together with face-toface sources of social and/or professional support. If the family does not feel comforted and supported to gradually move
back into the mainstream of life, it may be best to seek other
help. Childbirth educators are ideally positioned to coordinate support for bereaved families after pregnancy or infant
loss. Empathic health care, face-to-face social networks, and
trustworthy internet resources will help these families cope.
Table 1. Selected Online Support Resources for Perinatal Loss

Resource
Type of Support
Type of Info
Type of Communication
Americanpregnancy.org/pregnancyloss/index

Blighted ovum, Miscarriage,

ectopic, Subsequent pregnancy
Medical, emotional,
psych
Forums, email, phone
Asrm.org

Miscarriage, stillbirth,
ectopic, multiple
Medical, emotional,
psych
None
Babyloss.com

Miscarriage, ectopic,
stillbirth, neonatal, infertility
Medical, emotional,
Forums, email
psych
Hygeia.org (drberman.org)

Miscarriage, ectopic, stillbirth,

Medical, emotional,
neonatal, multiple,
psych
subsequent pregnancy
Forums, email, phone,

Facebook
Miscarriagesupport.org.nz

Forums, email, phone
Medical, emotional,
psych
Missfoundation.org
Miscarriage, stillbirth, neonatal,
Emotional, psych


Chat, forums, phone, email,

Facebook, Link to local
groups
Nationalshare.org

Miscarriage, ectopic, stillbirth,

Emotional, psych
neonatal, subsequent pregnancy
Chat, forum, phone,

email, Facebook
Pregnancyloss.info

Miscarriage, ectopic,
stillbirth, neonatal
Medical, emotional,
psych, spiritual
Forums, memorial, Facebook

(at Facts About Miscarriage)
Climb-support.org
Multiple birth

Medical, emotional,
psych
Phone, email, forum,

Facebook (CLIMB, Inc.)
Inciid.org

Medical, emotional,
psych
Chat, forums, memorial
Medical, emotional,
psych
Forums, links to local

groups
Infertility, miscarriage,
Resolve.org
Infertility, pregnancy loss

UK-sands.org

Emotional, psych
neonatal
Forums, phone, email, links

to local groups
Sands.org.au

Emotional, psych
neonatal
Phone, email, links to local

groups
First Candle

Stillbirth, Sudden infant death

Medical, emotional,
syndrome (SIDS), sudden
psych
unexplained infant death (SUID)
Phone
Sidscenter.org

Sudden infant death syndrome

Medical, emotional,
(SIDS), sudden unexplained
psych
infant death (SUID)
Phone, email
Based on table from Geller et al., 2006, with additions by Pector

Van der Houwen, K., Stroebe, M., Schut, H., Stroebe, W., & van den Bout,
J. (2010a). Online mutual support in bereavement: an empirical examination. Computers in Human Behavior, 26, 1519-1525.
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resistance to grief online. First Monday, 16(12). Retrieved January 25, 2012,
from http://www.uic.edu/htbin/cgiwrap/bin/ojs/index.php/fm/article/viewArticle/3168/3115 .
Stroebe, M. S., Van der Houwen, K., & Schut, H. (2008). Bereavement
support, intervention, and research on the internet: A critical review. In
M. S. Stroebe, R. O. Hansson, H. Schut, & W. Stroebe (Eds.), Handbook of
bereavement research and practice: Advances in theory and intervention (pp. 551
574). Washington, DC: American Psychological Association.
Van Uden-Kraan, C. F., Drossaert, C. H. C., Taal, E., Seydel, E. R., & van de
Laar, M. A. F .J. (2008). Self-reported differences in empowerment between
lurkers and posters in online patient support groups. Journal of Medical
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Yalom, I. D., & Leszcz, M. (2005). The theory and practice of group psychotherapy (5th ed.). New York, NY: Basic Books.
Dr. Pector is a board-certified family physician in Naperville,

IL, a Fellow of American Academy of Family Physicians and a
member of medical staff at Edward Hospital, Naperville. She is
the mother of identical twins, one of whom was stillborn, and a
singleton son. She used online support groups to cope with the
loss of her twin son, went on to coordinate a local support network for similarly bereaved parents, and has lectured and written
about multiple-birth bereavement and online support groups.
Call for Papers

You are encouraged to write a paper for the
journal. Here are some up and coming themes:
Complementary and Alternative Therapies in
Pregnancy and Childbirth
Non-traditional Families
Concepts in Adult Education
Environmental Factors in Childbirth and Pregnancy
Global Perspectives
Breastfeeding
Prenatal Education and Information Technology
The Psychology of Pregnancy
Military Families
Please, consider sharing your knowledge and
expertise with ICEA members.
The deadline for the Summer 2012 journal
(Complementary and Alternative Therapy) is
May 15, 2012
Email your paper to editor@icea.org
Author guidelines can be found at http://www.
icea.org/content/information-journal-writers
Childbirth Education for Parents Receiving
Perinatal Palliative Care

by Kathie Kobler, MS APN PCNS-BC CHPPN, Rana Limbo, PhD RN PMHCNS-BC,
and Cheryl Oakdale, MS RNC-MNN IBCLC LCCE CIMI
Abstract: Parents who receive a prenatal

diagnosis of a fetal life-threatening condition face the heartbreaking task of planning for both birth and death. Childbirth
educators can play a key role in helping
parents prepare for birthing their baby
who may not live long after delivery.
Existing perinatal palliative literature
focuses on creating birth plans with the
parents, but not on childbirth education. This article addresses that gap by
exploring how to talk with parents receiving perinatal palliative care about their
expectations of the birthing process and
how to identify an approach and content
for tailored childbirth education and support.
Keywords: childbirth education, perinatal, palliative care, perinatal loss
Childbirth educators serve as a bridge between uncertainty and competence for women and their partners
who look forward to birthing a baby. Every year thousands
of couples learn during pregnancy that their baby has a
life-threatening or lethal condition. Perinatal palliative care
services were developed to address these parents interwoven
hope and grief from the moment of a serious fetal diagnosis
through pregnancy and birth. Parents preparing for both the
birth and death of their baby present a unique challenge for
childbirth education. All childbirth educators are expected
to be competent in the aspects of grief that accompany perinatal loss or unexpected outcomes (International Childbirth
Education Association (ICEA, 1999). Yet childbirth educators have few, if any, specifics for what constitutes effective,
family-centered instruction for families receiving perinatal

palliative care. This article will address that gap by providing
practical, relationship-based communication and education.
Background
Despite medical advances, there continues to be an overwhelming prevalence of perinatal loss in the United States. In
2007, congenital malformations and chromosomal anomalies
accounted for over 20 percent of all infant deaths, with an
overall occurrence of 6.75 infant deaths per 1,000 live births
(Matthews & MacDorman, 2011). Examples of such conditions include Trisomy 18, Potters syndrome, anencephaly, or
complex congenital heart defect. These impressive numbers
signify opportunities for all interdisciplinary team members,
including childbirth educators, to provide individualized
guidance to parents receiving a life-limiting fetal diagnosis.
Beginning in the early 2000s, perinatal and neonatal
clinicians began incorporating palliative principles into
their care with increasing frequency. Palliative care is now
commonly provided for the following perinatal and neonatal
patients: 1) fetuses diagnosed with life-threatening conditions, including those considered to be incompatible with
life; 2) neonates born at the margin of viability; 3) neonates
and infants not responding to medical intervention, or those
receiving treatments that prolong suffering (Munson &
Leuthner, 2007). Interdisciplinary teams provide perinatal
palliative care in clinic, hospital and hospice settings.
We encourage the addition of childbirth

educators to the perinatal palliative
interdisciplinary team, as they are
poised to provide unique education and
support to parents preparing for the
experience of their babys birth.
The Internal Working Model Interview
Integrating Perinatal Palliative Care and

Providing the right perinatal palliative care for families
requires the skill and knowledge of many different disciplines. Boss, Kavanaugh, & Kobler (2011), as well as Wool
(2011) note the importance of an interdisciplinary team in
comprehensive delivery of such care, yet childbirth educators are not often specifically listed as members, only implied
(Boss, Kavanaugh & Kobler, 2011; Munson & Leuthner,
2007). We encourage the addition of childbirth educators
to the perinatal palliative interdisciplinary team, as they are
poised to provide unique education and support to parents preparing for the experience of their babys birth. The
International Childbirth Education Associations Position
Paper (ICEA, 1999) emphasizes the goal of achieving the
best possible outcome for all members of the family. When
parents are receiving perinatal palliative care, childbirth
educators can adapt their approach to meet such a goal by
providing individualized care that is respectful of the familys
preferences, hopes, and their grief. Childbirth educators can
collaborate in care throughout the perinatal palliative care
continuum in many ways.
Establishing a Relationship
The delivery of quality perinatal palliative care requires
establishing a relationship with expectant parents. Upon
diagnosis, the couple faces the enormous task of taking in
medical information and weighing treatment choices in order to make the best decisions for their unborn childs care.
During the pregnancy, parents report grieving the multiple
losses of both a normal pregnancy and a healthy baby, while
also feeling disconnected and isolated from others (Ct-Arsenault & Denney-Koelsch, 2011). It is of utmost importance
that all interdisciplinary team members effectively collaborate to provide seamless, compassionate care. Childbirth
educators may be consulted shortly after the diagnosis is
made, or they may be asked to meet with the parents closer
to the babys due date. Once consulted, the childbirth
educator will need to discern what is most important to the
parents in order to best create a learning plan that will meet
their unique educational needs.
Establishing effective communication between interdisciplinary team members and parents is a process that is
quite familiar to childbirth educators. Relationship-based
communication strategies focus on learning what the other
is thinking and feeling, what motivates him or her, and what
has meaning or value. Knowing these things is important
for a childbirth educator working with a couple whose baby
is likely to die early in the perinatal period. The childbirth
educator is uniquely positioned to form a relationship with
the couple and their baby before and after birth. Families
receiving perinatal palliative care need their childbirth
educators expertise as they plan for their babys birth. They
also need help identifying how their special circumstances
may be influencing their preparation. Bowlby (1988), who
developed attachment/caregiving theory, identified that we
construct dynamic representations of ourselves and others
in relation to goals. These representations, which he termed
internal working models, influence how we respond.
The internal working model interview (Pridham, Schroeder, & Brown, 1999) focuses on learning a couples goals for
childbirth: their expectations and intentions, what motivates
them, and what they value. Exploring these aspects of their
childbirth goals will help the childbirth educator learn the
couples fears, hopes, joys, and desires and, in doing so,
tailor the education to the familys unique needs. Note that
the interview includes some elements that begin with, Im
wondering. For example, when the childbirth educator
wonders what it would be like, the parent automatically
imagines (i.e., reflects on) a different state of mind or being.
Internal working models function and are embedded in these
types of reflections. The following section includes questions
Kathy Zimmerman APSU

a childbirth educator might incorporate into a conversation
with parents to learn about their internal working model: the
first group of questions explore expectations and intentions,
the second group of questions relates to values.
Learning About Expectations and Intentions
a. Whats on your mind about your childbirth?

b. What do you expect labor to be like?
c. What have others told you about labor that has
influenced your expectations?
d. What do you expect your babys birth to be like?
e. Im wondering what feelings you have about your
labor.
f. What have others told you about birth that has
influenced your expectations?
g. Im wondering what youre hoping for?
h. What fears do you have?
i. Im wondering what it would take for things to go
as you want them to?
j. What would you need to do?
k. What would you need from others?
l. Think of a time in the past when you had something important to prepare for. How did things go?
What went into getting ready?
m. In the past, if you had concerns or fears, how did
you work through them? How did others help?
n. How could I help?
Learning about values
o. What is most important about your childbirth?

p. When you think of your babys birth, what comes
to mind?
q. When you share the story of your babys birth with
a special friend, what will be the first thing you will
want to tell him or her?
How to Use the Information

The internal working model interview creates an opportunity to reflect with the parents. Taking notes, perhaps
linked to elements of a birth plan, may help create a document that could be copied and shared with the parents after
the interview. Because these questions require more than
a yes or no answer, the educator should be prepared to sit
quietly when waiting for a response. Sometimes it helps to
focus on breathing during this waiting period or silently
counting to allow for a compassionate silence to unfold. It
is often after such moments of silence that parents are able
to verbally express their feelings or concerns. The interview
process provides an opportunity for the childbirth educator

to come to know the parents and gives them a chance to be
heard. Both are critical for relationship development.
Using the internal working model interview helps to
draw out an expectant mothers feelings. A broad question
such as, Whats on your mind about your childbirth? may
actually help an expectant mother express feelings such as
fear, uncertainty, or anxiety. With a fuller understanding of
what the mother is experiencing, the childbirth educator
can address the feelings, answer questions, and co-create a
solution or plan. The following are actual examples from our
clinical experience:
A teenage mother preparing for the birth of her baby with
Potters Syndrome confides that she is extremely afraid of
passing stool on the delivery room table.
The mother of a baby with Trisomy 18 is distressed: I
cant even go to the thought watching my baby die, Im
still so scared of how he is going to get out of me.
A mother expresses a previously unspoken fear that if her
baby dies before delivery there will be no way to get the
baby out of her body, but will stay inside her forever.
The internal working model interview provides the
childbirth educator a strategy for engaging in a relationship
that includes the expression of feelings. Knowing the parents
feelings allows the childbirth educator to appropriately respond to these concerns as well as inform and reassure them.
This information will also assist the perinatal palliative team
in creating a plan of care that will honor their feelings, values
and expectations.
Identifying Parents Hopes and Establishing

Goals of Care
Perinatal palliative care focuses on planning ahead for
the babys comfort (e.g., positioning, pain management,
nutrition and hydration) and the familys birthing preferences (Limbo, Toce, & Peck, 2008/2009). Numerous authors
have provided examples of birth and neonatal advanced care
plans (Boss, Kavanaugh, & Kobler, 2011; Kobler & Limbo,
2011; Kuebelbeck & Davis, 2011; Munson & Leuthner,
2007). A perinatal palliative birth plan includes similar topics
as a regular birth plan, listing the following patient preferences: comfort measures and pain management, hydration,
fetal monitoring, family presence, and postpartum care. A
perinatal palliative plan will also include an outline of medical interventions for the babys care from the moment of
delivery through the postpartum period, and should the incontinued on next page

fant survive, plans for discharge home with the mother. Table
1 provides a listing of possible perinatal palliative birth plan
topics. These plans are ideally co-created by the perinatal
palliative care team and the family prior to delivery, and then
shared with all labor and delivery and Neonatal Intensive
Care Unit (NICU) team members who will be present at the
babys birth. In order to co-create effective plans, perinatal
palliative team members must first ascertain the parents
goals and hopes for their babys care. Such plans may include
a comprehensive listing of medical interventions for mother
and child, mixed with requests to facilitate special moments
of memory making. For example, one father, upon learning
of his daughters rare, lethal diagnosis, confided in a palliative team member that he was most concerned that she
would be afraid at birth, surrounded by so many unfamiliar
voices. As such, he decided to start singing to her every day
during the pregnancy. After confiding to the perinatal palliative care nurse about this special song, he was encouraged to
include it in the birth plan, using the words, father wishes
to sing to his daughter as soon as possible after birth. Indeed, this proud father sang to his little girl during labor, he
gently whispered the words to her within minutes of delivery,
and bravely sang the same song during her dying.
In addition to planning for the babys special care needs,
the perinatal palliative team members should be attentive
to the mothers potential needs during labor, delivery, and
postpartum. A childbirth educator might say, Youve done
so much for your baby. I want to be sure that we also think
about what you might need or whats important to you.
Remind the mother that she can advocate for herself by
asking her nurse midwife or physician, What are the risks
and benefits of this procedure? or Is there something else I
could do instead? The childbirth educator can promote the
mothers physical, emotional, and spiritual care needs, and in
doing so, can help the mother focus on those aspects of her
childbearing experience.
Creating Individualized Childbirth Education

Using the information gleaned from the internal working model interview, the childbirth educator should strive to
create an individualized education plan, while also recognizing that the parents have already had to assimilate a large
Table 1: Perinatal Palliative Birth Plan and

Neonatal Advance Care Plan Topics
Opening Section summarizing the following:
Prenatal diagnosis and expected prognosis,
Parents goal for their baby (e.g., We want to spend
as much time as possible with our son and provide only
measures that will bring comfort).
Prenatal discussions, education, and support
Care of the Mother During Childbirth

Preferred timing, method and location of delivery
Pain management and comfort measures
Use and frequency of fetal monitoring during labor,
with interventions to be provided should signs of
fetal distress occur
Management of the Baby at Birth

Anticipated condition at birth and preferences for
interventions
Extent of resuscitative measures to be provided and
when
Symptom management, pain control, and comfort
measures
Presence of family members and friends
Rituals, faith traditions, or prayers to be offered
and when
Care of the Family Following Delivery

Preferred location for care of baby (e.g., remain in
mothers room, NICU, home)
Plan for initiation/limitation of diagnostic testing
and/or medical interventions (e.g., confirming tests,
consultation with pediatric sub-specialists, limitation of emergency treatment)
Potential initiation of feedings/nutrition
Pharmacological & non-pharmacological management of pain, dyspnea, seizures or other symptoms
Opportunities to optimize familys time together
including sibling presence, memory-making activities, photographs, kangaroo care
Anticipatory plan for babys care when mother
ready to be discharged home (e.g., home with
mother with hospice, care in NICU)
End-of-life care needs (e.g. preferred location of
death, chosen funeral director, autopsy, tissue donation) Note: some families may prefer to address these
issues after the babys death.

amount of information about their babys condition. Childbirth educators should be mindful of using a teaching and
learning pace that allows adequate time for practice, discussion, and feedback in a supportive, nurturing environment.
Although the diversity of views and learning opportunities
that occur in a full class experience are valued, providing a
private class for parents receiving perinatal palliative care
would be the preferred learning experience. The class should
be scheduled at a preferable time that promotes parental
participation. Some may want to receive such education
weeks prior to their due date; others may wish to meet a few
days before the babys anticipated delivery.
If a perinatal palliative service has several families
waiting for the birth of their baby with a life-threatening
condition, the childbirth educator could create a peer support learning opportunity. Some perinatal palliative families
may wish to join with other parents anticipating a similar
outcome for their baby. The childbirth educator could first
meet with each family separately to provide individualized
education, and then bring the parents together, depending
on their agreement and permission.
Overall, childbirth educators strive for a good fit between
the parents personal philosophical beliefs and values along
with the theoretical and practical underpinnings of the education (ICEA, 1999). The internal working model conversation
will help to draw out parents needs. Educators will then need
to adapt their content and approach accordingly. Simultaneously, childbirth educators should be prepared to provide
grief support (Kohn & Moffitt, 2005) as the learning process
may give rise to parents expressing feelings of sorrow and loss.
Childbirth Education Topics for Perinatal Palliative Patients

Teaching topics that childbirth educators may wish to
address with perinatal palliative care parents are presented in
List 1. As noted in the list, each topic provides information
on choices for care during pregnancy, labor & delivery and
the postpartum period. This list can serve as a starting point
for dialogue that can lead to tailored childbirth education,
focusing on specific interventions that are applicable to the
anticipated needs of the mother and baby.
Choice for Care During Pregnancy

Just as with all expectant parents, the childbirth educator will provide education on pregnancy health and wellness.
The childbirth educator will need to be in communication
with both the mothers obstetrician/maternal-fetal medicine

specialist and the perinatal palliative team in order to best
provide individualized information related to her pregnancy.
In addition, the parents may benefit from an early offer to
tour the labor & delivery and neonatal intensive care units.
We have learned from numerous clinical experiences that
simply touring the units will lead to parents self-identification of questions about the delivery and care of the baby.
During such tours, the childbirth educator should allow for
parents to determine the pace of the visit, providing time for
pauses or silent reflection as needed.
In addition, the introduction of relaxation techniques
should be considered during the prenatal period. Wright
(2005) suggests the use of visualization as a part of childbirth
education. When focused on the mother/baby relationship, visualization provides an added way of fostering their
connection. This mindful approach to relationships can be
transferred from childbirth education class to labor, delivery
and throughout the parents grief work.
Overall, the goal of perinatal palliative childbirth
education is to foster learning that will empower the parents
through the birthing experience. The childbirth educator
may also provide literature or online resources created especially to help parents discern expectations and honor hope
during the tender time of awaiting babys birth. Books such
as A Gift of Time: Continuing Your Pregnancy When Your Babys
Life is Expected to be Brief (Kubelbeck & Davis, 2011), or
websites such as Bereavement Services (www.bereavementservices.org) and Perinatal Hospice (www.perinatalhospice.
org), can serve as wonderful, supportive resources for parents
receiving perinatal palliative care.
Choices for Care During Labor, Delivery

Childbirth educators will help parents learn what to
expect during childbirth (see Table 2). Depending on the
mothers predicted medical needs, childbirth choices could
include low intervention options such as no intravenous
fluids, no continual monitoring, or standard labor options
like walking and using a birth ball or squatting bar. Mothers need to know that they can receive pain medications
when needed, even if their birth plan originally indicated a
preference for no medications. In preparation, the childbirth
educator can remind parents that all decisions are reversible,
that they can make a different choice in the middle of a situation that feels out of control.
Subsequently, the childbirth preferences vocalized by
parents during childbirth education can be included in the birth

plan. Parent preferences about medical interventions such as
heart rate monitoring during labor or cesarean birth if the babys
condition deteriorates should be communicated back to the
entire perinatal palliative care team. The final decision about
such medical interventions should be mutually agreed upon by
the delivering obstetrician/maternal-fetal medicine specialist
and the parents, and conveyed clearly in the birth plan.
Choices for Connecting with Baby

Interestingly, the choices shared during perinatal palliative childbirth education may also afford unique opportunities for parents to anticipate connecting with their baby, thus
honoring the parent-child relationship (Kobler & Limbo,
2011). If the childbirth educator hears a mother say, I want
to spend as much time as possible with my baby, a discussion about ways to promote bonding would be appropriate,
including holding the baby, skin-to-skin contact at birth,
kangaroo care, or offering the breast for comfort. Other creative ideas may arise as parents explore options for connecting with their baby. For example, a perinatal palliative care
nurse asked one mother if she considered using a focal point
during contractions. Thoughtfully, the mother identified a
plan to have her babys heartbeat recorded prenatally and
placed inside a giraffe toy. Indeed, when she was admitted
to the hospital, the giraffe was a constant companion during her labor. After birth, the giraffe stood watch over the
baby at all times, and was held by the mother when she was
discharged home.
Choices for Postpartum Care

The childbirth educator should prepare parents for
the mothers physical recovery needs following delivery and
possible sites of postpartum care. In providing education
on postpartum topics, it is important to remember that
the baby may not transition quickly into the dying process
after birth. Some neonates with life-threatening conditions stabilize during the postpartum period, surviving to
be discharged home with the mother and to receive home
palliative care services (Kobler & Limbo, 2011). As such, the
educator should participate as the perinatal palliative care
team explores the parents hopes for their babys care after
delivery, with eventual incorporation of such preferences
into a neonatal advanced plan of care (Boss, Kavanaugh, &
Kobler, 2011; Munson & Leuthner, 2007).
Table 2: Recommended Childbirth

Education Topics for Families Receiving
Pregnancy
Pregnant patients rights and responsibilities
Physiological & psychosocial patterns of pregnancy,
including emotional changes (i.e. grief and depression)
Maternal nutrition
Discomforts of pregnancy
When to call the physician
Warning signs during pregnancy
Signs of preterm labor
True versus false labor
Signs of labor initiation
Informed consent
Labor/Birth

Stages of labor
Timing contractions
Fetal monitoring (if applicable)
Anticipated medical interventions/procedures
Variations and complications (long labor, fast labor,
cesarean birth)
Benefits of labor support
Comfort measures for mother (acupressure, focal
point, and relaxation techniques)
Breathing for labor and birth
Positioning for labor and birth
Low intervention experience
Pain relief options (analgesia, epidural, general
anesthesia)
Postpartum

Choices for site of recovery care

Postpartum physical care needs
Postpartum depression
Promoting bonding with baby
Offering baby breast for comfort
Initiation of breastfeeding or pumping (per mothers preference and babys anticipated care needs)
Grief support resources

Ongoing Support to the Family Receiving

As childbirth educators actively partner with perinatal
palliative care teams in preparing parents for birth, they may
also choose to be present, as their practice and time affords,
during the babys living and dying. Childbirth educators are
encouraged to continue to invest in the relationship they
develop with families requiring perinatal palliative care.
Follow-up may include visiting after the delivery, sending
a card or email, or placing a telephone call after discharge,
thus honoring the relationship by conveying compassion and
support.
Conclusion
When parents learn during pregnancy that their baby
has a life-threatening condition, their childbirth educator
can serve as a bridge from a place of uncertainty to one of
confidence and competence in birthing their child. Using an
internal working model interview process can promote reflection by the childbirth educator and parents. In an initial
meeting, the childbirth educator wants to understand what
the parent is experiencing. Saying, I wonder what youre
expecting or What scares you the most? allows for a
reflective response, one that is likely to put both parent and
childbirth educator more at ease. From such conversations,
the childbirth educator can then provide individual instruction and support, and in collaboration with the perinatal
palliative interdisciplinary team, assist in creating a birth
plan that will honor parents preferences for care. Childbirth
educators are invested in helping parents have a positive
childbearing experience, and at the same time, they are in
relationship with the parents. Such a relationship can endure,
bringing comfort and hope to parents when their baby dies
and for many years to come, as they bring to mind their
childbirth educators wisdom and compassion.
References
Boss, R., Kavanaugh, K. & Kobler, K. (2011). Perinatal and neonatal palliative care. In Wolfe, J., Hinds, P. S., & Sourkes, B. M. (Eds.). Textbook of
Interdisciplinary Pediatric Palliative Care (pp. 387-401). Philadelphia, PA:
Elsevier Saunders.
Bowlby, J. (1988). A secure base: Parent-child attachment and healthy human
development. New York: Basic Books.
Ct-Arsenault, D. & Denney-Koelsch, E. (2011). My baby is a person:

Parents experiences with life-threatening fetal diagnosis. Journal of Palliative
Medicine, 14(12), 1302-1308.
International Childbirth Education Association (ICEA). (1999). ICEA position paper: The role of the childbirth educator and the scope of childbirth
education. Retrieved January 25, 2012, from http://www.highbeam.com/
doc/1P3-592412961.html/print
Kobler, K. & Limbo, R. (2011). Making a case: Creating a perinatal palliative
care service using a perinatal bereavement program model. Journal of Perinatal & Neonatal Nursing, 25(1), 32-41.
Kohn, I. & Moffitt, P. (2005). Perinatal loss: Helping families grieve and
heal. International Journal of Childbirth Education, 20(3), 4-7.
Kuebelbeck, A. & Davis, D. (2011). A gift of time: Continuing your pregnancy
when your babys life is expected to be brief. Baltimore, Maryland: The Johns
Hopkins University Press.
Limbo, R. Toce, S. & Peck, T. (2008/2009). Resolve through sharing position
paper on perinatal palliative care. La Crosse, Wisconsin: Gundersen Lutheran
Medical Foundation, Inc. Retrieved January 25, 2012, from http://bereavementservices.org/index.asp?pageID=general&CompID=56&btnSubmit=ByF
ileID&cboApplicationID=247&cboFileID=42805&cboFileCategoryID=1145
7&cboFileCategoryIDMain=Matthews, T. J. & MacDorman, M. F. (2011). Infant mortality statistics from
the 2007 period linked birth/infant death data set. National Vital Statistics
Report, 59(6). Retrieved January 20, 2012, from: http://www.cdc.gov/nchs/
data/nvsr/nvsr59/nvsr59_06.pdf
Munson, D. & Leuthner, S. R. (2007). Palliative care for the family carrying
a fetus with a life-limiting diagnosis. Pediatric Clinics of North America, 54,
787-798.
Pridham, K., Schroeder, M., & Brown, R. (1999). The adaptiveness of mothers working model of caregiving through the first year: Infant and mother
contributions. Research in Nursing and Health, 22, 471-485.
Wool, C. (2011). Systematic review of the literature: Parental outcomes after
diagnosis of fetal anomaly. Advances in Neonatal Care, 11(3), 182-192.
Wright, P. M. (2005). Childbirth education for parents experiencing pregnancy after perinatal loss. Journal of Perinatal Education, 14(4), 9-15.
Kathie Kobler is an advanced practice nurse at Advocate

Lutheran General Childrens Hospital where she coordinates the
Pediatric Palliative Care & Center for Fetal Care programs. Kathie is a national presenter on palliative and bereavement issues,
and co-author of publications on the needs of families receiving
perinatal palliative care following a life-limiting fetal diagnosis.
Rana Limbo is Director of Bereavement and Advance Care Planning Services, Gundersen Health System. Rana is the first author
of a position paper on perinatal palliative care and is an expert
in relationship-based communication strategies, including the internal working model interview, which is featured in this article.
Cheryl Oakdale is the Coordinator of Childbirth Education at
Advocate Lutheran General Hospital. She is a certified childbirth
educator through Lamaze International, and a certified lactation
consultant, specializing in the needs of premature & medically
fragile infants.
Through the Eyes
of a Father:
A Perinatal Loss
by Meghan E. Cholette, RN MScN PhDc
Abstract: Perinatal loss prompts profound

grief and suffering. This paper presents
a review of nursing discourse on suffering and grief arising from perinatal loss.
Drawing upon literature and professional
experience, it becomes apparent that the
paucity of research and minimal society
recognition increases the extent to which
the paternal experience with perinatal
loss is misunderstood and mismanaged.
Differences in paternal and maternal
grieving need to be supported so that the
healing process can be skillfully initiated
with families and the child forever lost to
them. When these unexpected tragedies
occur, perinatal healthcare providers,
childbirth educators and doulas are in a
unique position to facilitate health, healing and a natural transcendence through
creating positive memories.
Keywords: grief, perinatal loss, fathers
Rodgers and Cowles (1997) say that suffering, as a result

of its complex nature and ability to deeply affect a person, is
truly unique. Just as the experience of life is viewed differently in each persons eyes, so is the experience of suffering
and death. It is the distinctiveness of our very individuality
which underpins the client-centered care approach embedded in the profession of nursing today. In an exploration of
the complexity of the human experience of suffering, Rodgers and Cowles (1997) acknowledge that there is currently a
lack of research and no conceptual foundation to guide the
response to suffering witnessed day after day. By exploring
the effects of the suffering experience and the appropriateness of a nursing theory, perinatal care providers can achieve
a fuller understanding of what it means to be human and to
suffer. In turn, this knowledge can enhance our capacity to
assist those confronted by suffering to find meaning in the
experience. As perinatal care educators and providers, we
prepare not only ourselves, as witnesses, but bereaved families to cope with what may be the most arduous life event a
parent may ever have to face - perinatal loss. The effects of
suffering such a loss are vast, affecting individuals far beyond
the physical to include emotional, social, spiritual, and
psychosocial aspects. The purpose of this scholarly inquiry
concerns the human health experience of suffering, resulting
from perinatal loss and its complex impact on the everyday
life of fathers.
Perinatal educators and providers bear witness to what
one may consider to be the ultimate and most devastating
family loss the death of a child. As not only caregivers but
a resource to bereaved families, it becomes apparent that the
experience endured by mothers is typically the primary focus
of care and, as Callister (2006) points out, the major focus
in literature has been on the maternal perspectives of perinatal loss (p. 227). McCreight (2004) notes that often institutional practices and procedures tend to marginalize the
fathers role in child rearing. The impact of a fathers role in
pregnancy and birth is unclear and valued mostly as merely a
support person to the mother (OLeary & Thorwick, 2005).
This is seen as unjustified, as it ignores the actual lived experience of fathers and how losing a child has forever changed
their lives. By focusing the majority of time and care on the
mothers experience, the paternal experience of perinatal loss
is not well understood and is often disregarded and overlooked. Given the primarily maternally focused literature and
personal experience(s) in clinical practice, it is believed that
we have not truly recognized or addressed the true suffering
experienced by bereaved fathers.

it is believed that we have not truly

recognized or addressed the true suffering
experienced by bereaved fathers.
For such a tragedy, it is an endless nightmare, magnified
by a darkened, silenced nursery and empty arms (Whited,
1985). While experiencing a perinatal loss is profound, there
is seldom more than minimal societal recognition (Callister,
2006). Too often, parents who have experienced a perinatal loss
are not given the opportunity they need and deserve to manage their emotional angst and grief either as individuals or together as parents. The gravity of such an occurrence should not
be taken lightly; to lose a child is to lose a part of hopes and
dreams for the future. Perinatal loss is something that forever
remains a part of being, even for a witness (Callister, 2006). Yet,
many perinatal care providers feel ill prepared when it comes to
bereavement care. Thus, it is vital that perinatal care providers such as nurses, childbirth educators and other perinatal
healthcare providers, such as doulas and midwives deepen their
ability to fully understand what the victims of perinatal loss
endure and how they can assist in their grieving process.
Incorporating Theory into Practice:

Opportunity for Caring
Human suffering is a difficult subject and often one that
most people avoid addressing because of a sense of discomfort or unease. Fletcher (2002) points out that children
epitomize youth, health and vitality, thus the notion of a
child passing is uncomfortable, unfamiliar, and too painful
for most people to contemplate. Death of a child becomes
unthinkable and unimaginable. What is the appropriate
reaction or response in light of such a profound tragedy? As
healthcare providers whether at the bedside or in the community, we bear witness to the enormous effects of human
suffering. However, if not fully understood or addressed,
how can they guide and support their clients transcendence
through the human experience of suffering? Meleis (1997)
believes that the integration of an established human science
nursing theory, such as Watsons Theory of Human Caring, strengthens practice by providing structure, and offers
a specific language to describe, explain, and guide nursing
practice. It is believed that incorporating such a framework
into practice can not only help support perinatal care provid-
ers in their delivery of bereavement care but can also help

develop and nurture a relationship of mutuality, trust and
openness needed to support bereaved fathers.
Watsons theory serves as a guide to being with clients as
it embraces reflection and explores new ways of knowing. Its
purpose, according to McGraw (2002), is based upon gaining
a higher sense of harmony within the mind-body-spirit, and
to develop therapeutic, caring relationships (Watson, 2001).
It is believed that people who experience suffering can also
experience self-transcendence (Wayman, Gaydos, & Barbato,
2005). With understanding of the core principals of Watsons
theory, it is thought that this paradigm provides support for
a natural transcendence and can be valuable when exploring the paternal experience of perinatal loss. Watsons (1989)
philosophy states that individuals naturally move past the
physical world by controlling it, changing it or by living in
harmony with it. Through seizing moments, that transcend
time and space, the care provider and client generate healing
and self-transcendence. It is thought that this theory supports
processes involved in uncovering pathways to transcend the
human experience of suffering, that is, to find meaning in
the death of a loved one. It is through self-awareness, inner
strength, intentionality and a higher sense of consciousness
that individuals reveal their capacity to surpass and transcend
his or her usual self in the face of adversity and suffering
(Watson, 1999). Through the integration of a human science
nursing theory, such as Watsons Theory of Human Caring,
the natural cadence of life continues and the dance and songs
of fathers we care for can finally be seen and heard.
Review of Literature
The primary intent of this review is to explore gaps
within the current perinatal loss literature, to identify areas
requiring further development, and to locate areas for future
research which focuses specifically on the paternal experience of enduring a stillbirth.
Gender Differences
Within the current discourse on bereavement following
a perinatal death it is evident that the main focus of inquiry
remains on the maternal experiences of perinatal loss.
However, in a small body of literature, gender differences are
referred to as incongruent grief, a euphemism referring to
how gender accounts for the different ways parents experience and cope with their babys death (Callister, 2006). It
is important to explore these differences fully so that care
providers and educators can facilitate a grieving process that
Jeannie Nicholson

cares for the fathers more directly. Thus, the promotion of
health and healing in the face of perinatal loss will be inclusive rather than exclusive.
Within the literature it is argued that gender stereotypes
cloud societal expectations and assumptions, and in turn
misconceptions of depth and impact on the paternal experience are minimized. Page-Lieberman and Hughes (1990) as
well as others have focused on how fathers perceived perinatal loss, finding that many fathers are often caught between
their own needs and the needs of their significant others,
that their role is often marginalized (McCreight, 2004), and
that fathers are at more at risk for developing chronic grief
(OLeary & Thorwick, 2005). With the loss of a child comes
profound grief and sorrow.
The emotional
impact of such
a loss is deeply
rooted. Despite
the lack of physical
appearance of loss,
fathers do grieve
on an emotional
level as do mothers
(Page-Lieberman
& Hughes, 1990).
McCreight (2004)
identified recurring feelings in bereaved fathers such as selfblame, loss of identity, anger, fear and the need to remain
strong for the family. Loneliness, isolation, pain, guilt, denial,
and social withdrawal were recurrent themes observed in
bereaved fathers (Callister, 2006; Franche & Bulow, 1999). In
ONeils (1998) study, one father described his experience as
an emotional rollercoaster ride: it was clear my role needed to
be one of strength and supportmy grief was not a priority
(p.33). These feelings of overwhelming responsibility and the
need to portray unwavering strength and stoicism often prevented fathers from addressing their own grief. It is said that in
a time of crisis the male role of protector intensifies (OLeary
& Thorwick, 2005), yet when mothers and fathers lose a son
or daughter through perinatal loss, there is no control of the
ultimate outcome. No amount of human ingenuity can bring
about an undoing. One father describes his own personal
struggle between remaining strong for his loved ones and
acknowledging his own uneasy feelings:
Its like being a hypocrite. You tell them that everythings

going to be okay. And you really want to believe, truly
believe, its going to be okay But you still have questions
yourself. You dont know if everythings going to be okay.
But you need to give some sort of reassurance. Otherwise
what else would you say? Well, I dont think everything is
going to be okayso the tremendous weight is just trying to
be the solid wall and be strong for the whole family But
it wears on me too (OLeary & Thorwick, 2005, p.81).
Not unlike other fathers who had talked of their loss,
he suffers in silence, with the weight of being strong for the
whole family wearing him down.
Remaining strong for the family is not the only cause
of this silent grieving. Due to societal pressures to return to
normalcy and recover quickly from the grieving process, men
are reluctant to seek support (Carroll & Shaefer, 1994) and
to publicly address their feelings. They tend to depend solely
on themselves during their bereaved state (McCreight, 2004),
closing the vital lines of communication between partners and
care providers. Where there is dissonance in grieving and suppression of feelings, there is an increased risk of chronic grief
(Kamm & Vandenberg, 2001). However, research has shown
that when communication is enhanced, unremitting depression and fatigue can be reduced (May, 1996). Thus nursing
care should focus on establishing open lines of communication between all involved, and identifying and exploring more
deeply these grieving differences in bereaved fathers.
To carry such an immense burden in a time of grief is
perceived to be a barrier to obtaining proper care and much
needed support. Stinson, Lasker, Lohmann, and Toedter
(1992) also highlighted substantiated research indicating
clear gender differences in parental bereavement, stating that
men and women grieve equally. However, unlike women
who tend to express grief openly, men are less expressive,
and often cope with grief in a more stoic and inner manner.
OLeary and Thorwick (2005) state that, despite the intense
pressures caused by mourning, men tend to be less selfdisclosing, less expressive and are less interdependent. This
posturing of unwavering strength may lead to a false sense
of coping, resulting in many fathers not receiving the proper
support and care that is needed in this time of overwhelming
grief. By paying special attention to verbal and non-verbal
cues of grieving manifested by parents, nurses, childbirth
educators, doulas and other perinatal care providers can
ensure that appropriate support is provided to bereaved
fathers in particular. Care providers and educators need to

be cognizant of gender differences, recognizing that displays
of wall-like strength may be masking deep inner pain. With
this insight, we can open the dialogue, gently facilitating the
grieving process for the mother and father, and in the end,
supporting the couples relationship (DeFrain, 1991).
If it is believed that men and women grieve equally, yet
differently, then it is likely that their response to support
will vary as well. In practicing from a family-centered care
perspective, it is imperative to equally value and explore the
experience of loss through the eyes of a father. Recognition,
respect and acknowledgment of grief as a valid response
with a bereaved father is an intricate part of caring and lays
the central foundation in establishing a therapeutic-healing
relationship with the father and his family. Clearly, further
inquiry into the complexity of a fathers suffering resulting
from a perinatal loss, along with an exploration of the supports which can mitigate his loss as he is assisted through the
grieving process, is urgently needed.
Creating Special Memories

Emotion comes in waves (Capitulo, 2004) and may
intersect. Often on special days such as anniversaries, due
dates, birthdays, death days, and special family occasions
such as Christmas, we can anticipate that the grief and sadness for parents experiencing neonatal loss will be enhanced
as past memories are resurrected. The exacerbation of grief
on special occasions was first introduced by Freud and then
Peppers and Knapp (as cited in Capitulo, 2004) who termed
this anniversary and shadow grief. Looking back to precious memories shared and to meaningful mementos such
as photographs, locks of hair, footprints, handprints, name
cards, and birth certificate, may provide comfort and may
help to authenticate and actualize the pregnancy, birth and
subsequent death of a child, now and in years to come (Capitulo, 2005; Lundgvist, Nilstrum & Dykes, 2002; Alexander,
2001). Capitulo (2005) focused on healing interventions
following a perinatal loss, identifying that lack of validation,
such as discouraging parents from seeing or holding the baby
can result in disenfranchised grief resulting in a nonevent.
One of the greatest parental fears reported in this study was
that their child would be forgotten in time (Capitulo, 2005).
From this literature review and personal experience,
clearly both parents should be given the opportunity to be
actively involved in the creation of memories, and memen-
tos to help authenticate and actualize the true existence

and death of their child. Support for these families needs to
include being with the baby and both parents. By initiating
the grieving process authentically with the parents and in
the babys presence, we engage in a therapeutic relationship
which enables essential healing in years to come to unfold.
Without engaging in the grieving process, undertaking new
beginnings can become problematic.
New Beginnings
Every individual is a unique being and thus every
experience in life is highly individualized. Given the broad
diversity in how people experience loss and grieving, is there
a time when humans, as individuals, stop enduring life, stop
suffering and begin to transcend to a place of possibility, and
discovery of meaning? At what moment, if any, can we forget
for a time and begin living again? And in what ways can we
connect with bereaved mothers and fathers so that undertaking new beginnings can become a viable reality? Through human suffering, growth, personal identification, self-discovery,
new possibilities and positive outcomes may ensue. In other
words, as a result of lived-experiences, such as the loss of a
child, changes occur within that might have not happened if
the experience were not lived. As care providers and educators we can assist families in mourning to find meaning in
the experience by being open to change and by exploring
with them their deepest thoughts and feelings.
Battenfield affirms that suffering can provoke discovery
and awareness, putting forward the belief that the highest
level of suffering is used as a tool to find the meaning of life
(as cited in Rogers & Cowels, 1997). Just as Zacharias (1996)
stated we are doomed to destinies of alarming possibilities (p. 44). In a quest for understanding, one may come to
believe that the end of suffering only exists when a person
able to acknowledge the necessity of the suffering experience, to understand that change is possible, and to strive to
find true meaning in the experience. It is through developing the knowledge and understanding of suffering resulting
from a perinatal loss which will enable the ability to identify
patterns of suffering. This awareness will ultimately enhance
the capability and capacity of perinatal care providers to
address this poignant form of suffering. In those first few
raw moments surrounding a perinatal death, the meaning is
not yet revealed in the midst of exquisite pain and suffering.
Research that explores this process through the eyes of the
father will further our understanding of the human expericontinued on next page

ence of suffering. Wayman, Gaydos, and Barbato (2005)
believe that, through this identification of suffering and processes involved in transcendence, we may be able to better
understand the experiences of clients and that this greater
understanding will help with the ability to create opportunities for self-transcendence. It must be acknowledged that
only when the sufferer is ready, can self-transcendence occur.
However, there can be no question that support for the
bereaved should continue beyond post-discharge to ensure
future health and healing. This may be achieved through
connecting bereaved families to community bereavement
support programs, social work and through encouraging supportive dialogue and participation with other social networks
within the community. While this shift from suffering to
transcendence can never be imposed, these authors point
out that the care provider can take steps to facilitate this
recognition by presenting opportunity for self-transcendence.
When confronted by anothers suffering, care providers
are given the unique opportunity to witness, through the life
lens of the bereaved, the ultimate loss--the loss of an unborn
babe. In this instance, goals should focus on increasing our
ability to facilitate healing (Wayman, Gaydos & Barbato,
2005) and co-creating positive memories in therapeutic ways
with bereaved families.
Discussion
Until the early 1970s fathers were forbidden in the
delivery room for the birth of their children. Today, men are
more involved in the care and support of their significant
other, yet their role in pregnancy and in labor and delivery
is not clearly defined or explored, leaving fathers, in the face
of perinatal loss, without essential care. There is a paucity of
research on the impact and meaning of perinatal loss to the
parents, most particularly the fathers of these lost babes. The
capacity for recognition, understanding and validation of
the fathers emotions during and/or following the loss of his
baby is essential to begin the healing process. As van Manen
(2002) points out, recognition is inextricably intertwined
with selfhood and personal identity: to receive recognition means to be known (p.82). Providers of care, in any
capacity, are in a unique, frontline position to explore the
paternal experiences and to provide critical supportive care
with fathers coping with perinatal loss. Even with the limited
research undertaken to date, there is a need for nurse educators, advanced nurse practitioners, and nurse managers to
facilitate translation of this knowledge into nursing praxis.
The experiences of fathers can no longer be disregarded.
We can explore specific coping mechanisms along with support strategies which can assist in fathers personal transcendence. The specific differences in grieving and coping with
the loss of a child between mothers and fathers, and in different cultures and religions, need to be considered when caring
for bereaved families, as caring strategies maybe differ as well.
Additionally, the impact and meaning of losing a child, as
well as gender specific care need to be created, evaluated and
implemented into current nursing practices. Incorporating a
nursing theory, such as Watsons theory of human caring, can
assist in caring-healing for bereaved fathers. Watsons theoretical paradigm not only provides structure and a specific
nursing language but can also aid in identifying standards of
care and quality assurance (Brooks & Rosenberg, 1995).
Conclusions and Recommendations

In a sense, suffering in life is a way to authenticate and
personalize our own unique existence. Without adversities
in lifetimes of loss, deep suffering and personal pain from
which some meaning can be constructedthere would be
no self awareness, discovery, growth or healing. However, in
times of suffering, those connecting with bereaved families,
such as perinatal nurses, midwives, childbirth educators and
doulas can enable the grieving process associated with a loss
of a child. The following are some recommendations to assist
in the facilitation of grieving in bereaved families:
1) Providing quality care to bereaved families is not something that

comes easily. So know your resources, and understand your policies or procedures.
2) Develop a base knowledge of how cultural practices surrounding
death and dying may influence the grieving process.
3) Acknowledge the loss.
4) Incorporate active listening techniques as families often simply
need to tell their story and express their sorrow.
5) Establish a supportive and private environment.
6) Get families involved in bereavement care such as bathing or
dressing the child if appropriate.
7) Take cues from the family as this may provide insight into what
the loss has meant to the family.
It is only through awareness and gaining a better understanding of the human experience of health and of suffering,
that these care providers will enhance their capacity to support and enable their clients, to move towards transcendence
in response to the death of their child. It is through this
understanding and further exploration that we will finally be
able to hear the true life songs of bereaved fathers.

It is recommended that further inquiry and phenomenological research into the experience of perinatal loss through
fathers eyes be conducted. Bettering our professional understanding and comprehension of a fathers perinatal loss experience will help to identify nursing practice implications which
foster relational nursing practice so that the fathers grieving
journey, in the future, will be addressed and supported with
care. Through furthering our understanding of Watsons
theoretical paradigm, meaning and ways of promoting healing
to bereaved fathers may be revealed. Understanding human
relationships is central to future work with bereaved families.
Through being truly present in our relational practice, and
through developing our understanding of the needs of fathers
who often suffer is silence, we will be better prepared to address the deep suffering we witness. With timely intervention
with fathers, perhaps the long term effects of the death of a
child on the fathers everyday life can be eased. The memories
are held in the heart forever, and perhaps in time their lost
baby will become a gift that is forever cherished.
Life is a gift
No matter how short
No matter how fragile
To be held in the heart forever
(Unknown)
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Meghan Cholette has worked as both a perinatal nurse and

professional practice leader in Toronto, Ontario. After completing her Bachelor of Science in Nursing and Masters of Science
in Nursing at York University, in 2004 and 2007 respectively,
Meghan is now in the process of completing her doctoral degree
at the University of Arizona with a primary focus of perinatal
nursing and perinatal loss.
Loss and Grief in
Twin Pregnancy and Birth

by Jean A. Kollantai, AB BA MSW(c)
Abstract: Many expectant parents of twins

experience the death of one or both babies. This may happen in pregnancy, at
birth, after birth, or in infancy, and in a
number of scenarios. All of the considerations that are important when a singleton baby dies are equally important when
a twin or twins have died. There are additional needs specific to bereaved parents
of twins at the time of their loss, and
throughout the ongoing grieving process.
Sensitive, informed care by professionals
is a major contributor to the future wellbeing of the parents and of surviving of
subsequent children.
Keywords: twins, multiples, death, surviving twin, grief
Death in Twin Birth

Since the advent of Assisted Reproductive Technology
(ART) in the 1980s, the incidence of multiple births has increased in many countries. In the United States, the twinning
rate climbed 70 percent from 1980 through 2004, remained
stable, and rose 1% in 2008, when there were 138,660
infants born in twin deliveries. The triplet and higher-order
multiple birth rate rose more than 400 percent during the
1980s and 1990s before peaking in 1998, and remains significantly higher than in 1980 (U.S. Department of Health and
Human Services (U.S. DHHS), 2010). The many successful
twin pregnancies and birthssome of them to celebrities and
widely publicizedand the successful deliveries of higherorder multiples, even octuplets, have created the impression
that twin pregnancies are routine and safe, completely
normal, and always have a happy outcome.
In reality, any problem that may occur in a singleton

baby is twice as likely to affect a set of two, because there
are two babies. Additionally, there are many conditions for
which twins are at higher risk, or are uniquely at risk, such as
the complications of sharing a placenta, as some do. In the
United States, death during infancy is five times as common
among twins than among singletons (29.8 vs. 6.0 per 1,000)
(U.S.DHHS, 2009), and fetal death is at least three times as
common (U.S.DHHS, 2007).
Many thousands of parents each year experience situations that involve the death of one or both of their babies,
even in pregnancies and births that were full-term and
previously complication-free. The early, high-resolution ultrasound that is now prevalent has meant that many parents
have bonded to each baby and my twins from as early as
six or eight weeks gestation, so that first and second trimester losses involve a full grief reaction for many parents. All
parents grieve the loss of babies whose number and identities were quite real to them.
Of the many scenarios experienced by parents who have
contacted the Center for Loss in Multiple Birth (CLIMB) for
support, some of the most prevalent are listed in Table 1.
For those who support pregnant and birthing mothers,
including childbirth educators, it is of fundamental importance to communicate to bereaved parents of twins that
their loss situation is not unheard-of, and is not rare. Besides
being accurate, this contributes to parents not feeling singled
out and to blame for the loss of this prized pregnancy, as
many are prone to feel. Then, it is essential to offer support
for parents needs that is well-informed about grief experienced by bereaved parents of twins. This kind of care enables
parents to have opportunities to process, over a long period
of time, their complex tragedy and unique parenting situation in a way that contributes to their mental health and that
of their surviving or subsequent children.

Childbirth Education and Bereaved Parents

of Twins
When offering childbirth education to expectant
parents of twins, it is vital that the parents be made aware of
the symptoms of preterm labor in the second trimester, of
chorionicity and the symptoms of monochorionic complications such as Twin to Twin Transfusion Syndrome (TTTS),
and of the importance of discussing with their medical
caregiver the timing and mode of their babies delivery in the
third trimester. It may be helpful that parents know that loss
is possible, even in the third trimester. Parents, who often are
well aware of prematurity as a threat, commonly think that
Table 1. Common Scenarios of Twin Loss

death in-utero of one twin in the third trimester
death in-utero of both twins in the second or third
trimester, most often in those sharing a placenta
delivery of twins in the third trimester after the
death of one of them in-utero weeks or months
before
delivery in the third trimester after adverse prenatal
diagnosis for one of them weeks or months before
death of one twin during or after delivery from
delivery complications, medical accidents, and
previously undiagnosed conditions
delivery in the late second trimester of monochorionic twins with Twin to Twin Transfusion Syndrome
(TTTS), with the death of both, or the death of one
and an uncertain outcome for the other
death of one twin after birth from Necrotizing
Enterocolitis, hospital infections, birth trauma, or
Sudden Infant Death Syndromein some cases,
after the death earlier of the other twin from the
same or another cause
decisions about multi-fetal pregnancy reduction (for
number conceived), selective termination (when
the adverse prenatal diagnosis of one baby may be
threatening to the other), removing life support,
and various kinds of intervention during pregnancy
or after birth, are all common, sometimes several of
them in the same pregnancy and birth
there is a safe, guaranteed time after 32 or so weeks gestation, certainly after 36 weeksand then are blindsided by loss
and not able to meet their needs.
When supporting parents who have experienced or will
experience the death of one or both of their babies, there are
some important points. Parents vary in their life situations,
their loss scenarios, their cultural and personal attitudes
about twins and having twins, and their interpretation of
events based on their religious or other worldviewbut there
are common points that when understood can be applied
sensitively to each specific, often unique, situation. Following
are some suggestions for practice.
Acknowledging Both Babies

It is essential to acknowledge both the babies, no matter
how many weeks or months ago one of the babies has died,
and no matter how poor the babys diagnosis was, or how
healthy, or tenuous, the survivor. Parental needs cannot be
effectively addressed without recognizing them as parents
of both their babies, regardless of other circumstances.
Although parents may have difficulty focusing on more than
one aspect of their situation at a given time, or may seem to
be preoccupied with one aspect at a given time, nothing that
takes place with one of the babiesa death, a life support
decision, establishing lactation, a burial, a surgeryis as it
would be if that baby were the single baby. Everything is influenced by the whole situation, and parents are reacting to
the whole situation. The presence of a healthy surviving twin
does not make anything easier, but introduces additional,
wrenching dimensions to every experience and decision (Kollantai & Fleischer, 2003).
It is essential to acknowledge both the

babies, no matter how many weeks
or months ago one of the babies has
died, and no matter how poor the
babys diagnosis was, or how healthy, or
tenuous, the survivor.
Recognizing Confusion and Uncertainty
The presence of a living baby, and the overwhelming nature of the death of both of the babies, can create confusion
and uncertainty among caregivers that must be recognized,
and in parents, a similar confusion and uncertainty must
be acknowledged. The realities of the death of both babies,

and the stark juxtaposition of life and death when one baby
has died, are intimidating for parents and for caregivers. It is
crucial that caregivers be aware of their own feelings and reactions in order to play in active, knowledgeable, and compassionate role in helping parents to cope with the immediate
situation, and to create memories that will facilitate their
healthy grieving when they are able. The complex scenarios
that take place make it difficult for parents to create these
memories without assistance, yet it is these memories that
help them to integrate their experience as a whole while experiencing their grieving process (Kollantai & Fleischer, 2003).
Twin-specific Parental Needs

All the considerations that are important when a singleton baby dies are equally important when there is the death
of a twin or twins. Following are some additional needs
specific to bereaved parents of twins.
Creating integrated memories. Most parents would
give the world later for an opportunity to have held their
babies together, or even to have seen them together, after
one or both has died perinatally. After months of their very
special pregnancy, this will be parents only chance to do
so, ever, and experience my twins together. These events,
and photos of the babies together, also are fundamental in
processing the whole reality of what has occurred, and later
in helping a survivor understand the story of his birth and
the loss of his twin sibling. Without this opportunity, many
parents who lose one of their twins end up with the feeling
of two completely separate babies and completely separate
experiences, as also do many who experience the death of
both babies at different times and see them only separately.
Challenges of timing, geography (if a survivor is in
another hospital), and the emotional resistance of staff, relatives, and, sometimes, the parents, need to be overcome. For
parents who have been pregnant for some months after a
twin has died in-utero, or had received an adverse diagnosis
of a severe and often not normal-looking condition, there
are ways of normalizing the experience and making informed,
supported decisionsparents tend to see the beauty in their
children. The memories and photos of the twins together
become treasured proofs of the fact that they did have twins;
it was not a strange dream (Kollantai & Fleischer, 2003).
Determining zygosity and chorionicity. Zygosity is
often assumed to be unimportant, but along with chorionicity
is important for later assessment of probable causes and risks

for subsequent pregnancies (subsequent twin pregnancies
often happen with Assisted Reproductive Techniques). ART
pregnancies often produce monozygotic babies (Spandorfer
& Rosenwaks, 2005), and monozygotic babies are frequently
discordant for a congenital anomaly (Cao & Monni, 2005).
Knowing zygosity helps parents know how to mentally picture
their babies, and also impacts issues in raising a survivor. Testing should be done to the extent necessary and possible, as it
may not be possible at all later (Kollantai & Fleischer, 2003).
The limbo situation and fear for any survivors.
Many parents do not know for some time whether their baby
who has survived his twin will live or die. Even the parents of
the healthiest survivors fear what may happen, now that they
have experienced the death of that babys twin. This presents
many issues and difficulties in bonding, for which full support is needed. It also means that some parents may wish to
delay the burial of one baby until the outcome is known for
the other (Kollantai & Fleischer, 2003).
Birth announcements. Many parents have appreciated
creating birth announcements for the babies that acknowledge the whole situation and honor both babies and our
twins, while letting others know what has happened and
encouraging them to remember and speak of them (Kollantai
& Fleischer, 2003).
The importance of baptism or other ceremonies.
Many parents have deeply appreciated the opportunity for
baptism when both twins have died, feeling it was one of the
few things they could do for them and to recognize them.
Those with a surviving baby have appreciated having a service
that combines a baptism for the living baby with a memorial
for the twin who died (Kollantai & Fleischer, 2003).
Grief for Loss in Twin Birth

Parents grieve for each baby who died and for my
twins. They grieve for the relationship that they believe
that the children would have had with each other, and, if
they have a surviving baby, grieve for his loss and worry
about how it may affect him throughout his life. For those
who have lost both babies, the silence is deafening, as
one mother expressed it after the sudden death of both her
daughters at 37 weeks gestation. For those with a survivor,
homecoming is not the happy, lucky day but the full
recognition that his twin will never be there. It may mean
caring for a tiny, fragile baby, possibly as a first-time parent,
and quite possibly after a medically traumatic pregnancy and

birth for the mother, or following medical intervention to
conceive. For all, it is a time of raw emotion, guilt, anger or
blame, marital strains, difficulties with relatives and friends,
pervasive feelings of vulnerability and confusionoften, while
having the imperative of trying again for another pregnancy
as soon as possible (especially if the loss of both babies and
ART are involved). Many feel betrayed by the technology
that had made their babies possible (Kollantai, 2005).
They grieve for the relationship that

they believe that the children would
have had with each other, and, if they
have a surviving baby, grieve for his loss
and worry about how it may affect him
throughout his life.
One of the most difficult aspects for most parents is
twin encountersseeing, hearing about, or in any way
being exposed to living twins or higher order multiples, or
being expected to relate to them in any way. For most, this
continues to be very painful for years to come, especially if
they are of the same sex and zygosity, and to make various
life situations very problematic (for example, a surviving twin
begins preschool and there is a set of twins in the class, or a
friend or relative becomes pregnant with twins).
Twin-related issues also complicate subsequent childbearing. No parent is able to say, Im going to try again and
have my next twins, next year. Most very much want to
have twins again, while very much fearing possible complications. Some feel guilty for not being as excited about
conceiving their much wished-for subsequent baby as they
had been when they learned about their twinsand if they
had lost both twins, there is not even the illusion that that
one baby will even the score for what they lost. Parents who
have lost one of their twins have learned that no one replaces
anyone, even an identical child born to the same parents at
the same timeand are concerned for the impact on their
survivor if they were to have a subsequent intact set of twins.
Not a small number of people experience loss in more than
one, even more than two, subsequent multiple pregnancies,
or have living children who represent three multiple pregnancies. For those who do have living twins in a subsequent
pregnancy, there is an even more vivid reminder of what they

have also lost.
For the majority of parents, the death of one or both
of their twins means the permanent, enormous loss of the
dream of raising living twins, being the visible parent of
twins, and a permanent loss to their status and self-esteem
as parents, no matter how many other, single children they
have or will have. Their lack of recognition as parents of
twins, in the midst of all the attention to living twins and
their parents, is a constant frustration, as is not knowing how
it would have been to raise them. This leads some to think
their loss was a judgment that they were not ready for, or
deserving of, raising twins.
For everyone, all the emotions of grief are underscored
by the preciousness and irreplaceability of twins. Not knowing what it would have been like to raise them, and to learn
to regard them as individuals, may make it difficult not to
idealize how it would have been, and to separate the identity
of a survivor from that of his twin and the twinship. The twin
or twins who died may become icons in the family in ways
that may be uncomfortable for older, surviving, or subsequent children.
Thus, grief for loss in a twin pregnancy and birth is a
lengthy, complicated, and in many respects, lifelong process,
and is especially acute in the first two to three years. It is
often delayed or suppressed because of the needs of a survivor and pressure from others to be normal, even grateful,
and the need to try again for another pregnancy, especially
if there was not a survivor. Parents who have lost both twins
are dealing with the deaths of two babies, not just a collective twins. Clinical anxiety and depression are not uncommon, both in the first several years and afterward (Pector &
Smith-Levitin, 2005).
How Caring Professionals Can Help

Full support from caring, non-judgmental, informed,
and patient professionals is incalculably valuable for providing families with the best possible framework for processing
and healing. This support will help families through the
most painful aspects of their experience, help them normalize their experience within their lives, and to decrease the
mental health risks to themselves and their living children, if
or when they do have them.
Caring professionals can also help by encouraging
parents to be involved in pregnancy and infant loss support
groups, one-to-one peer support with other parents who
will always wish that both their twins had survived, and will
always incorporate the memory of their baby or babies in the
life of the family.

have experienced twin loss, and professional counseling.
Those who have a very young surviving twin may find it difficult to want to identify as a bereaved parent, or to deal with
care of the baby during the group meeting or counseling
session, but it is vitally important to do so. Those who have
lost both twins need to be with others who will not minimize
or avoid their losses. Contact with peers is invaluable in sharing how others have lived with the many challenges, over the
months and years, and in being able to vent to those who get
it. Informed professional counseling helps even those who
are coping adaptively to avoid the many pitfalls and be able
to count on being listened to and understood. All of these
are also especially helpful to those who have had to make
difficult decisions about their babies, ones that in many cases
they cannot share freely with their extended families and
friends, but which pose additional obstacles to peace and
healing if not fully addressed.
Childbirth educators who may be working with parents
that will give birth at some time after the death of one of the
babies in-utero, or will experience the death of one of the
babies at or after birth, are in a position to help parents develop a comprehensive birth plan that will incorporate parents needs and wishes, and help to ensure coordination and
communication among their caregivers. Examples are in the
website of CLIMB which is the Center for Loss in Multiple
Birth (CLIMB, 2012; Hodge, 2003). A birth plan is helpful
when it is known that both babies have died in-utero, or will
die at or after birth. For example, when both have congenital
anomalies, parents will have opportunities with their babies
that will facilitate their grieving process, even though it is
such a painful scenario for all involved. A plan is also helpful
in instances of delayed interval delivery (when one twin has
been born severely prematurely, and does not survive, and
the mother remains pregnant with the other baby), so that
there can be a more complete experience when the second
twin is born. This may include delayed burial of the first twin
so that the babies may be seen together, and the opportunity
to experience the first baby emotionally in a way that was
not possible while undergoing the stress of the remaining
high-risk pregnancy (Pector & Smith-Levitin, 2002). Active,
well-informed support helps give older, surviving, and subsequent children, along with their parents, the best opportunity for a life that is rich and satisfying, even though parents
References
Cao, A., & Monni, G. (2005). Phenotypic and genotypic discordance in
monozygotic twins. In Blickstein & L. G. Keith (Eds.), Multiple pregnancy:
Epidemiology, gestation & perinatal outcome (2nd ed., pp. 226-231). London
and New York, NY: Taylor & Francis Group.
CLIMB. (2012). Center for Loss in Multiple Birth (CLIMB) Inc. Significance
of multiple birth loss. Retrieved February 27, 2012, from http://www.climbsupport.org/
Hodge, A. (2003). Doula care and twin loss. International Doula, 11(3), 30-32.
Kollantai, J. (2002). The context and long-term impacts of multiple birth
loss: A peer support network perspective. Twin Research, 5(3), 165-174.
Kollantai, J. A. (2005). Coping with the impacts of death in a multiple birth.
In Blickstein & L. G. Keith (Eds.), Multiple pregnancy: Epidemiology, gestation
& perinatal outcome (2nd ed., pp. 874-876). London and New York, NY:
Taylor & Francis Group.
Kollantai, J., & Fleischer, L. (2003). Multiple birth loss and the hospital
caregiver. Retrieved from http://climb-support.org/pdf/mblnicu.pdf
Pector, E. A., & Smith-Levitin, M. (2005). Bereavement: Grief and psychological aspects of multiple birth loss. In Blickstein & L. G. Keith (Eds.),
Multiple pregnancy: Epidemiology, gestation & perinatal outcome (2nd ed., pp.
862-873). London and New York, NY: Taylor & Francis Group.
Pector, E. A., & Smith-Levitin, M. (2002). Mourning and psychological
issues in multiple birth loss. Seminars in Neonatology, 7, 253. doi: 10.1053/
siny.2002.0112
Spandorfer, S. D., & Rosenwaks, Z. (2005). The phenomenon of monozygosity in iatrogenic pregnancies. In Blickstein & L. G. Keith (Eds.), Multiple
pregnancy: Epidemiology, gestation & perinatal outcome (2nd ed., pp. 214217). London and New York, NY: Taylor & Francis Group.
Swanson, P. B., Pearsall-Jones, J.G., & Hay, D.A. (2002). How mothers cope
with the death of a twin or higher multiple. Twin Research, 5(3), 156-164.
U.S. Department of Health and Human Services, Centers for Disease
Control and Prevention, National Center for Health Statistics. (2010). Births:
Final data for 2008, p. 13. Retrieved from http://www.cdc.gov/nchs/data/
nvsr/nvsr59/nvsr59_01.pdf
Control and Prevention, National Center for Health Statistics. (2009). Births:
Final data for 2006, 21. Retrieved from http://www.cdc.gov/nchs/data/nvsr/
nvsr57/nvsr57_07.pdf
Control and Prevention, National Center for Health Statistics. (2007). Fetal
and perinatal mortality, United States 2004, 6. Retrieved from http://www.cdc.
gov/nchs/data/nvsr/nvsr56/nvsr56_03.pdf
Jean Kollantai is the Co-founder in 1990 of the Center for Loss

in Multiple Birth (CLIMB), Inc., an organization offering peer
support and advocacy by and for parents throughout the United
States, Canada, and elsewhere who have experienced the death
of one or more, both or all of their children in a multiple birth.
She has been Director since 1990.
Childbirth Preparation For
Families Pregnant
After Loss
by Joann OLeary, PhD MPH, Jane Warland, RM PhD, and Lynnda Parker, BSN
Abstract: The purpose of this article is to

provide childbirth educators with information on how to meet the challenging
needs of families pregnant after a loss as
they prepare for the birth of a new baby.
The authors who each have extensive
experience in developing and offering
educational support to families pregnant
after loss, share their experiences and
suggestions for a childbirth class especially suited for these families.
Keywords: prenatal parenting education, pregnancy after loss, Childbirth
education
Introduction
Early pregnancy loss occurs in approximately 30% of all
pregnancies (Price, 2006). The incidence of stillbirth after
28 weeks, in most high income countries ranges between 2
and 5 per 1,000 births (Flenady, Middleton, & Smith et al.,
2011). One study to date estimates that 50-86% of families
who have suffered the loss of a baby through miscarriage
or stillbirth goes on to have another pregnancy (Cusinier,
Kuijper, Hoogduin, de Graauw, & Janssen, 1996). A common
perception is that women and their partners overcome the
psychological effects of pregnancy loss with the subsequent
birth of a healthy child. However, women who have suffered
a miscarriage or stillbirth are much more likely to be anxious
or depressed during their next pregnancy - and after the
birth (Blackmore, Ct-Arsenault, Tang, Glover, Evans, Golding, & OConnor, 2011). This increased anxiety has been
found in fathers as well (OLeary & Thorwick, 2006a).
Childbirth educators need to be aware that what happens at the time of loss is remembered (Parker & OLeary,
1989) and painful memories of the past can alter parents
ability to trust the process of pregnancy (OLeary & Thorwick, 2006a; 2006b; 2011). Both the mother and her partner
now know there is no guarantee of a live baby (OLeary &
Thorwick, 2008). The purpose of this article is to provide
childbirth educators with information to meet the challenging needs of families preparing for the birth of a new baby
after a loss.
Painful memories of the past can alter

parents ability to trust the process of
pregnancy
Families Altered View of Pregnancy
Although there is a slight increased risk of recurrence,
the majority of women with a previous stillbirth have a live
birth in the subsequent pregnancy (Bhattacharya, Prescott,
Black, et al., 2010). Clinical reality supports overly anxious
parental behavior which presents a challenge in providing a
birthing class for these families. The loss of naivet can take
away the joy and anticipation of birthing a healthy baby
for both mothers and fathers (Ct-Arsenault, Donato, &
Earl, 2006). Multiple studies concur, not surprisingly, that
women with a history of loss have higher anxiety specific to
pregnancy compared to women without loss (Armstrong, &
Hutti, 1998; Ct-Arsenault, & Morrison-Beedy, 2001,) while
other studies have found higher trait anxiety (Hedegaard,
Henriksen, Secher, Hatch, & Sabroe, 1996). Still others found
significantly more depressive symptoms manifested by both
mothers and fathers (Samuelsson, Rdestad, & Segesten,
2001). Less understood is that a new layer of grief not anticicontinued on next page
Childbirth Preparation For Families Pregnant After Loss

pated surfaces when parents get pregnant again regardless of
how much intervention they may have sought for their grief
(OLeary, 2004). This has been found to interfere with attachment to the unborn baby (Ct-Arsenault & Donato, 2011)
and have a life-long impact on the subsequent child (OLeary
& Gaziano, 2011). With this information in mind, three
major questions guide the educator in forming the content of
a childbirth class designed specifically for these families.
1. How can I help these parents learn to trust their baby and
the womans body to give birth?
2. How can I help them create a safe place in which they
can let go and give birth?
3. How can I support them in understanding they can embrace the new baby while still loving the deceased baby?
The content of a birthing class is similar to what is
provided in any childbirth class curriculum, but the approach
of content needs to be sensitive to the story parents carry
from the last pregnancy and birth experience. A creative
and flexible curriculum is key. Some participants will have
taken classes during their previous pregnancy while others,
whose loss was early, will come to class with no background
on the process of labor and birth. Some families come with
unprocessed grief and trauma while others may have had
supportive intervention around the loss of their baby and
through the current pregnancy.
The content of a birthing class is similar

but the approach of content needs to be
sensitive to the story parents carry from
the last pregnancy and birth experience.
A creative and flexible curriculum is key.
Spreading the classes over a three to four week period
allows space and time to talk about what happened the last
time and helps guide the instructor in tailoring the class
content for each individual family. When possible, limit the
class size to no more than three to five couples to meet this
challenge. Taking your time is especially important for the
participants who have not had any specific intervention with
their grief or are struggling with attachment to the unborn
child out of loyalty to the deceased baby (OLeary & Thorwick, 2006a; 2006b).
The curriculum content needs to be flexible in order to

allow for emotional reactions to the subject matter. At the
first class allow ample time for parents to share their previous
birth stories. Some parents may feel flooded with emotions,
so let their story gradually unfold over time. Parents often
raise questions about the circumstances of their previous
loss, perhaps to try to comprehend an event such as a placenta abruption or other issues of pregnancy. This birth class
may be the first opportunity to clearly understand causes of
loss in the previous pregnancy, and this may be especially
true for the birth partner. Time to process is needed so
they know what they want and, by the last class, will have
a birth plan describing what they need for this babys birth.
Responses during the needs assessment of each couples
story of their previous loss will clue the instructor about the
parents readiness for content, and gives an opportunity to
determine when to raise and discuss course material. Do
not be surprised if the first class is taken up entirely by the
stories of their losses and how they have coped during the
new pregnancy.
The childbirth class can be an opportunity for healing,
as people who have experienced a trauma often need to tell
and retell their story (Neimeyer, 2006). Let the parents know
that taking the class gives them the opportunity to process
some of their pain ahead of the time rather than when they
will feel the most vulnerable, in active labor. Your class may
be the only place where they can do this work.
Use of Audio-Visual Aids

The instructor must be constantly cognizant of how
these parents hear and interpret words and explanations of
procedures (Parker & OLeary, 1989). Displaying anatomy
and physiology charts around the classroom is common in a
regular birthing class, but be aware that this can overwhelm
bereaved parents and may trigger painful memories. For
example, in one of our subsequent pregnancy class a fetal
development chart triggered a sharply painful response in a
father who had lost his twins at 22 weeks gestation.
Using principles of adult learning, start where the
learner is: ask parents how they feel physically at this point
in their pregnancy. Many couples have reported that discussing the assorted aches and pains of pregnancy helped them
feel normal and reduced their anxiety. Use this information to teach material about the anatomy and physiology
of changes in the womans body during pregnancy. While
reviewing anatomy and physiology, give parents information

about the babys development at each stage of pregnancy
(OLeary & Thorwick, 2011). Take time to point out how
the womans body is designed to protect and nurture the
baby. When teaching what happens during labor and birth,
explain that as the uterus contracts, the baby pushes and extends his/her body to help move down the birth canal. This
visual image helps many parents realize the baby is working
with the womans body through the contractions. For some
parents this might be the first time they allow themselves to
acknowledge this baby as real and about to be born.
Reviewing a Birth Film

Prepare parents for watching a birth film as this too can
trigger painful emotions and memories of loss. Give parents
a choice about viewing a video as a class, privately with the
instructor, or not at all. Another choice is to show a labor
and birth video developed specifically for families pregnant
after loss (Abbott Northwestern Hospital, OLeary, & Parker,
1995). When using videos, one way to decrease the visual
load is to show several short clips, stopping after each to discuss content, share feelings, ask questions, or plan a specific
focus for each clip. For example, the instructor might preface
the clip with In this section, I want you to notice the different
comfort measures the partner and midwife are using to support
the mom. Offering the option for parents to view such a
video alone at home is unwise as it can raise old feelings and
traumas with which one or both parents may need help to
process. One parent may prefer not to watch the video, and
this may cause conflict.
Teaching Breathing and Relaxation

After working so hard to stay pregnant, parents now
must shift their thinking toward relaxing and releasing
the baby from the mothers body. Teaching breathing and
relaxation is an opportunity to connect the woman psychologically and physically to the unborn baby and to rebuild
trust in the womans body to nurture and give birth to her
baby. Relaxation is crucial for this population, but can be
very challenging in light of the embodied grief that bereaved
parents carry (Gudmundsdottir, 2009). Therefore, it is important to witness and acknowledge that grief and learning
to live in a world without their beloved child is intermingled
with attachment to the new unborn baby. Families need the
educator to be with them in their pain and offer them opportunity to create meaning to their parenting of both their
deceased baby and the baby they are about to birth. The importance of this cannot be dismissed in light of the research
that suggests some parents delay emotional attachment to
their new baby for fear of another loss (Cote-Arsenault, &
Donato, 2011).
Teaching relaxation, breathing, and effleurage at the
same time can be too much for these families. Most parents
feel they have not relaxed during the entire pregnancy. One
woman attending subsequent pregnancy birthing classes
described her body as frozen; feeling like she was unable
to take deep breaths as it might harm the baby. Another
woman spoke of being dissociated from the body, afraid
to acknowledge there really was a baby inside. Partners
may have been afraid to touch the womans body since she
became pregnant. Assess a parents ability to relax by first
encouraging several deep breaths. Then move on to having
them feel other body parts, such as their faces, shoulders,
arms, and legs, ending up with their abdomen and the baby
inside. Both the mother and partner can benefit from practicing this form of relaxation.
In a regular birth class, visualizations often relate to
the power of the womans body to hold a baby within, and,
when the time is right, to give birth. This may not be useful
for these families because both the mother and partner can
have difficulty visualizing any part of a subsequent pregnancy is safe. Hence visualizing the baby within as healthy can
be helpful. In doing a guided visualization, we have found
focusing on the parenting aspect of the current pregnancy
while addressing their continued parent role to their deceased baby they still grieve for helps parents participate in
visualization of that babys unborn sibling. Another approach
is to use the deceased baby as the guide in helping the parents visualize what he/she might feel the new sibling would
want from the parents. Throughout the visualization offer
dialogue such as Its okay to love my new brother or sister. I
know I will always be in your heart too. When parents fully
understand that the new baby is already present, they may
be able to relax their body to participate in a visualization
that includes the baby (OLeary & Thorwick, 2011). Through
visualization many partners understand at last that touching
the womans abdomen and purposely talking to the baby
strengthens their connections as a family.

Preparing for Birth

Parents need guidance to separate the childbirth experiences just as they need to emotionally separate the deceased
baby from the new baby. It is helpful for these parents to
be taught that their new baby has been an equal partner
during pregnancy and will continue to be during labor and
birth. Assess the parents level of knowledge about the labor
and birth process Most can relate to some experience with
contractions from a previous labor. As you discuss the stages
of labor, gently lead parents in the process of describing how
they want this labor and birth experience to be different.
This also provides a context for differentiating normal physiological changes of pregnancy not just the warning signs of
problems, an important distinction parents need to know.
For example, the instructor of a regular class teaches that
nausea and vomiting is a normal sign of transition in labor.
For parents who have experienced a loss these symptoms
may trigger memories of side effects from the medication
used to stimulate labor to birth a stillborn baby. Another
couple in their subsequent labor began to shiver after the
epidural was placed and had flashbacks to the labor of their
deceased twins, remembering her shivering in like manner. Inform parents that if the previous labor was induced
because the baby died before birth, contractions and labor
will be very different this time, especially if they go into
natural labor. Even if labor is induced, reassure the parents
the contractions are very different when the baby is alive,
healthy and able to help in the labor process.
Teaching in the Birthing Room

Touring and spending time in the birthing area is an important step toward feeling safe there again. Prepare parents
for a flood of emotions. Teaching a session in a birthing room
gives parents the opportunity to reclaim the space before the
birth. For most families, going back to the birthing area is
stressful; often this class marks the first time theyve returned
to the scene of their loss. This is true even if they choose
a different hospital, as most labor rooms have very similar
equipment. Memories will surprise them and these will help
indicate what information they need on their birth plan to
help the staff caring for them know their specific needs. If
they will deliver in the same hospital, be sure parents know
which room they were in before so they can choose another
birthing room for this baby. There may also be items within
the room which the parents may ask to be removed. For
example, one couple saw the bedside table during the class
and remembered seeing their deceased daughter lying on
it. On their birth plan they requested not to have a bedside
table. Another couple saw the same type of blanket in the
warmer that their baby had been wrapped in when he died
and brought another kind of blanket with them for the new
baby.
Help them imagine ways to make the birthing room
a nurturing, safe space to let go and give birth. Remember
that the partner is just as frightened as the mother, and yet
still must support her. Some parents choose to have a doula
or a family member attend the birth to help support both
of them. Some parents distract themselves by focusing on
the technology and emergency equipment to help them feel
safe. While in the birthing room, encourage mothers to try
different positions on the bed. Some will remember their
position in the previous pregnancy and choose a different
position for this birth.
Most families want the technology of electronic fetal
monitoring. They will be good candidates for wireless,
remote monitoring where this is available. Where this is not
available, show the parents ways they navigate the cables
and wires while retaining the benefits of and upright position
or movement, such as sitting in a rocking chair or exercise
ball.
Prepare parents for the pushing phase of birth. Even
though they can hardly wait to give birth to a live baby, the
idea of pushing can frighten both parents. For those with
a history of stillbirth especially, pushing meant their babys
death. Discuss ways a partner, doula, or midwife can help
during this phase of labor, such as reminding the laboring
mother that, This is not the baby who died, It is safe to
push this baby out, or You can do this and I am here to
support you.
As difficult as the pregnancy may have been, some
mothers have voiced wanting to stay pregnant where they
know the baby is safe, fearing what might happen during birth or in the postpartum period. Partners often have
reported flashbacks during the pushing stage, unaware
they would have such a strong reaction when they were so
anxious to get the pregnancy over. It is important to gently
discuss how both parents are feeling.

Fear and Pain: Medications

Parents with a history of loss come to labor and birth as
highly anxious adults. Birth for them has been linked with a
very traumatic outcome. Some women escaped life threatening conditions in their last experience and the partner
may also come with fear of again witnessing such a trauma.
Teaching parents about medications involves more than just
presenting information about drugs, dosages and routes of
administration. In the birth class, teach parents to differentiate between feelings of being scared and feeling physical
pain along with how one exacerbates the other. Likewise,
partners may feel too vulnerable to share how fearful they
really are. Unable to cope with watching her in pain they
might encourage the mother to ask for pain medication
which she may not feel she needs. Suggest ways to talk about
all their fears, not just the fear of physical pain. Discuss ways
of coping with emotion and fear that are separate from ways
to deal with the physical pain of labor and birth. A woman
may say she needs medication to manage her fear or they
may request an epidural, not so much for pain relief, but to
avoid reminders of pushing sensations. This is very individual
as another woman may choose to feel the pain to remind
herself she really is having a baby. Care providers can help by
sharing their own optimism that they really will birth a live
baby while understanding that the parents may only dare to
hope that this will be a reality for them. Sometimes, being
able to give voice to their fear helps parents appreciate that,
for them, fear is an accepted part of this birth experience.
A Personal Plan of Care for Birth

A birth plan is helpful for these families and can be
created and discussed during the final class. The depth of
vulnerability these parents experience can be profound. It is
difficult, and often impossible, for these families to see themselves on the other side of birth, holding a live baby. These
parents need to be sure their caregivers know their pregnancy and birth history and will understand their requests.
Therefore, a flexible plan and caring, understanding caregivers to work with them can go a long way toward increasing
the parents ability to cope while decreasing their stress. In
this instance a birth plan is not a list of dos and donts but
includes what they want their care providers to know about
Table 1
Suggested Outline for a Birth Plan
History of the previous loss(es)
Parents emotional course during the current pregnancy
Any antenatal testing and their understanding of
the babys development
What emotional support they have had, such as
attending a pregnancy after loss support group
Desires regarding pain relief
Would they prefer a nurse/midwife stay with them
continuously or periodically
Do they want the baby to be monitored periodically or continuously
Do they want any family or friend to be with them
during labor
Any information they know that might trigger
flashbacks of their loss, such as losing contact with
the babys heart rate on the monitor
them as a family and what the upcoming birth means to

them as a family (See Table 1). It is important for the parents
to realize that the birth plan is their familys personal story to
the staff caring for them during labor and birth, significantly
different from the mothers medical history in her chart.
Postpartum Content
Many parents simply cannot hear about some topics
until they know this baby is safe. Giving information about
infant feeding and newborn care are two such topics, content
not easily taught while they are still pregnant. From their
viewpoint, this makes perfect sense. How can they even
think about feeding or caring for a baby when they dont
believe a live baby will come home? While parents may
not tolerate hearing about newborn care, they do need to
be aware that a new level of grief always surfaces when a
living baby is born. This is another part of the different, but
normal developmental process for the subsequent pregnancy
(OLeary & Thorwick, 2006 b; 2011). Not only do parents
face the normal adjustment phase after birth but they face
moving on without the deceased baby, the new babys older
sibling (OLeary, 2005).

References
Abbott Northwestern Hospital (Producer). (1995). Labor and Birth: Rebuilding trust [Video]. Minneapolis, MN: OLeary, J., & Parker, L.
It may therefore be useful to organize a separate post

partum class for this group. The curriculum in this class
could include the aforementioned feeding and settling
information but also gives this group an opportunity to
debrief with each other about what happened in their recent
birth. Such a class also will give the childbirth educator an
opportunity to reassure the parents that bringing a new baby
home can be a bittersweet time for them. The parents may
be experiencing some or all of the following:
Accidentally calling their new baby by their deceased
babys name
Breastfeeding problems, especially those associated with
anxiety
Unusual attachment either holding their baby emotionally close or feeling they want to cushion themselves
Ongoing fear that the baby is vulnerable (Warland 2000)
The childbirth educator is in a position to be able to
reassure parents that these thoughts, feelings and behaviors
are normal for them. Supportive intervention and education in the subsequent pregnancy has been found to have a
significant positive impact on parents raising children after
a loss (Warland, OLeary, McCutcheon, & Williamson,
2011 ; Warland, OLeary & McCutcheon, 2011; OLeary &
Warland, 2012;).
Armstrong, D., & Hutti, M. (1998). Pregnancy after perinatal loss: The
relationship between anxiety and prenatal attachment. Journal of Obstetric,
Gynecologic, and Neonatal Nursing, 27(2), 183-189.
Bhattacharya, S., Prescott, G., Black, M., & Shetty, A. (2010) Recurrence risk
of stillbirth in a second pregnancy. British Journal of Obstetrics and Gynecology, 117, 12431247.
Blackmore, E., Ct-Arsenault, D., Tang, W., Glover, V., Evans, J., Golding,
J., & OConnor, T. (2011). Previous prenatal loss as a predictor of perinatal
depression and anxiety. British Journal of Psychiatry, 19(5), 373378.
Ct-Arsenault, D. & Donato, K. (2011). Emotional cushioning in pregnancy
after perinatal loss. Journal of Reproductive and Infant Psychology, 29, 81-92.
Ct-Arsenault D, Donato K., & Earl, S.S. (2006). Watching and worrying:
Early pregnancy after loss experiences. MCN: The American Journal of Maternal Child Nursing, 31(6), 356363.
Ct-Arsenault, D. & Morrison-Beedy, D. (2001). Womens voices reflecting
changed expectations for pregnancy after perinatal loss. Journal of Nursing
Scholarship, 33(3), 239-244.
Cuisinier M, Kuijper J, Hoogduin C, de Graauw C, & Janssen H (1996).
Miscarriage and stillbirth: Time since the loss, grief intensity and satisfaction
with care. European Journal of Obstetrics and Gynecology, 52(2), 163168.
Flenady, V., Middleton, P., Smith, G., Duke, W., Erwich, JJ., Khong, TY.,
Neilson, J., Ezzati, M., Koopmans, L., Ellwood, D., Fretts, R., & Fren, JF.
(2011). Stillbirths: The way forward in high-income countries. The Lancet,
377(9778), 17031717.
Gudmundsdottir, M. (2009). Embodied grief: Bereaved parents narratives
of their suffering body. Omega, 59(3), 253-269.
Hedegaard, M., Henriksen, T., Secher, N., Hatch, M., & Sabroe, S. (1996).
Do stressful life events affect the duration of gestation and risk of preterm
delivery. Epidemiology, 7(4), 339-345.
Hunfeld, J., Agerberg, G., Waladimroff, L. & Passchier, J. (1996). Quality
of life and anxiety in pregnancies after later pregnancy loss: A case-control
Study. Perintal Diagnosis, 16(9), 783-790.
Summary and Conclusions

Bereaved parents have a range of special needs which
are best addressed in a separate class. Such a class, whether
the educator is providing one-to-one teaching or in a small
group, needs to be planned with a degree of flexibility built
in to enable the individual needs of the parents to be met.
Important points to remember are awareness that audiovisual materials may trigger painful memories, touring a
birthing room has a different purpose, and that a birth plan
is helpful for parents to process what they may need as well
as alerting nurse/midwives caring for them in labor to their
history. Giving information about infant care is best given after the birth. Offering a special class for bereaved parents is a
challenging but particularly rewarding aspect of a childbirth
educators role.
Niemeyer, R. (2006). Re-storying loss: Fostering growth in the post-traumatic

narrative. Handbook of post-traumatic growth: Research and practice. Mahwah,
NJ: Lawrence Erlbaum.
OLeary, J., & Thorwick, C. (2011). The baby leads the way: Supporting the
emotional needs of families pregnant following perinatal loss. Minneapolis, MN:
OLeary. http://www.cehd.umn.edu/ceed/onlinecourses/prenataldevelopment.html
OLeary, J., & Gaziano, C. (2011). The experience of adult siblings born after
loss. Attachment, 5(3), 246-272.
OLeary, J., & Warland, J. (2012). Intentional Parenting of Children Born
After a Perinatal Loss. Journal of Loss and Trauma, 17(2) 137-157 .
OLeary, J, & Thorwick, C. (2008). Maternal-Paternal representation of
pregnancy and attachment to the unborn child during pregnancy following
loss. Attachment, 2(3), 292-320.
OLeary, J. & Thorwick, C. (2006a). Fathers perspective during pregnancy,
postperinatal loss. Journal of Obstetric, Gynecologic, and Neonatal Nursing,
35(1), 78-86.
OLeary, J. & Thorwick, C. (2006b). When pregnancy follows a loss: Preparing
for the birth of your new baby. Minneapolis, MN: http://www.centering.org/
index.php?page=book&id=121&pid=964

OLeary, J (2005). The baby who follows the loss of a sibling: Special
considerations in the postpartum period. International Journal of Childbirth
Education, 20(4), 28-30.
OLeary, J. (2004). Grief and its impact on attachment in the pregnancy that
follow. Archives of Womens Mental Health, 7(1) 1-15.
Parker, L., & OLeary, J. (1989). Impact of prior prenatal loss upon subsequent pregnancy: The function of the childbirth class. International Journal
of Childbirth Education, 4(3), 7-9.
Price, S.K. (2008). Stepping back to gain perspective: Pregnancy loss history,
depression, and parenting capacity in the early childhood longitudinal study,
birth cohort (ECLS-B), Death Studies, 32(2), 97122.
Samuelsson, M., Rdestad, I, & Segesten, K. (2001). A waste of life: Fathers
experience of losing a child before birth. Birth, 28(2), 124-130.
Warland, J., OLeary, J., & McCutcheon, H. (2011). Born after infant loss:
The experiences of subsequent children. Midwifery, 27, 628-633.
Warland, J., OLeary, J., McCutcheon, H., & Williamson, V. (2011). Parenting Paradox: Parenting after infant loss. Midwifery 27, e163-e169.
Warland, J. (2000). Midwife and the Bereaved Family. Melbourne: AUSMed.
Joann OLeary is a consultant in the area of prenatal parenting,

facilitates loss and subsequent pregnancy groups for Health East
and field faculty for the Center for Early Education and Development at the University of MN. Her research includes the pregnancy following perinatal loss, raising children after a loss, and
the adult child born after an infant loss. She has written several
books and many journal articles related to pregnancy after loss.
Jane Warland is a registered nurse/midwife and senior lecturer in
midwifery at the School of nursing and midwifery at the University of South Australia. Her area of research includes pregnancy
and parenting after loss. She is also a bereaved parent and ran a
support group for families pregnant after a loss for several years
in her home town of Adelaide South Australia.
Lynnda Parker is a perinatal nurse with extensive experience
working with high risk families. She and Dr. OLeary co-facilitated a group for families pregnant after loss for sixteen years, as
well as developed a guided imagery CD on the Parenting Experience of Pregnancy, produced a manual for professionals and two
video productions on pregnancy after loss.
We want to hear about

prenatal education
practices for the
families of armed forces
personnel.
Contact editor@icea.org
for guidance on writing
an article.
The Reluctance of Women to

Respond to Preterm Labor
by Virginia Coleman Smith BSN ICCE RN
Abstract: Preterm birth occurs before 37

weeks gestation and is associated with
75% of perinatal morbidity and mortality for infants born without anomalies.
Preterm labor (PTL) symptoms include
increased vaginal discharge, low back
pain unrelated to activity, contractions,
and low pelvic pressure. The earlier PTL
symptoms are recognized and treated, the
more likely the labor can be halted and
normal growth of the fetus will continue.
The purpose of this paper is to explore
the reluctance of women to respond to
the symptoms of preterm labor. The childbirth educators expertise in relating to
pregnant women and knowledge of early
labor symptoms can have a major impact
on assisting women how to recognize and
respond appropriately.
Keywords: preterm labor, preterm behavior, preterm labor factors, and
mood disorders
Introduction
Preterm birth is the birth of an infant before 37 weeks
gestation and is associated with 75% of perinatal morbidity
and mortality for infants born without anomalies (March of
Dimes, 2011). Early term births from 37 to 38 weeks gestation are not considered preterm, yet do not meet the criteria
of full term 39-41 weeks gestation, and carry a higher risk
of health problems and death (March of Dimes, 2011). Infants born too early can face a lifetime of health issues ranging from cerebral palsy, respiratory issues, and learning disabilities (March of Dimes, 2011). Costing the United States
more than $26 billion in annual health care, or $51,600 per
infant born preterm, and accounting for more than 12.5%

of births, preterm birth continues to be a staggering public
health concern (Institute of Medicine, 2006). Despite the seriousness of this health issue, the preterm birth rate dropped
to 12.3% in 2008, from the 2006 rate of 12.8%, representing
the first two-year decline in over three decades (March of
Dimes, 2011). Childbirth educators play an influential role
in teaching pregnant women and their families the importance of identifying and responding to preterm labor (PTL)
symptoms. The timing of prenatal classes, generally in the
second and third trimesters, is simultaneous with the occurrence of PTL. The pregnant woman and her family are eager
for simple and specific instruction, as well as encouragement
and reassurance that they are able to respond appropriately.
With evidence suggesting prematurity is a preventable
disorder with fundamental behavioral changes among women and prenatal care providers (Papiernik et al., 1985), the
study of women and their response to preterm labor (PTL)
symptoms, or lack thereof, is a subject worthy of further
exploration. In working with pregnant women in a childbirth
education program for many years, I have seen a wide range
of reactions to the pregnancy experience. Recent literature
suggests that responses may be mediated by psychopathologies (Li, Liu, & Odouli, 2009; Dayan & Creveuil, 2009). The
purpose of this paper is to explore the reluctance of women
to respond to the symptoms of preterm labor.
Background
Because the impact of normal, physiological changes of
pregnancy can put women at risk for physical and emotional
complications, routine screening for modifiable behaviors
is included in the first prenatal appointment (American
Congress of Obstetricians and Gynecologists (ACOG), 2010).
There is evidence to suggest that screening women for psychosocial issues each trimester reduces the likelihood of low
birth weight and preterm labor by 50% (ACOG, 2010).
In a report from the Centers for Disease Control (CDC),

& Demianczuk, 2009; Friedman, Heneghan, & Rosenthal,

2009; Gennarro, Shults, & Garry, 2008).
Methodology
Teaching Points
Use terms the woman uses to describe symptoms
Acknowledge and affirm her self-care efforts
Emphasize calling if needed at any hour
Feinberg et al. (2006) reported that depression is the leading
cause of disease-related disability among women, with a rate
of 5%-25%, occurring primarily in the reproductive years. Depression, left untreated in pregnancy, has been associated with
risky lifestyle behaviors including poor food choices, smoking,
missed or delayed prenatal appointments, and recreational
drug use (Grote et al., 2010; Li, Liu, & Odouli, 2009).
A history of Attention Deficit / Hyperactivity Disorder (ADHD) in pregnant women, marked by inattention,
distractibility, and impulsivity, has been linked with preterm
birth. ADHD is considered a chronic disorder extending
into adulthood with ramifications for pregnant women,
who themselves may be suffering with undiagnosed ADHD
(Lindstrom, Lindblad, & Hjern, 2011). Across the specialties
of health care providers who see pregnant women, including
obstetricians, pediatricians, and family medicine practitioners,
a sizeable portion reported a lack of time to explore maternal
depression, a hesitancy among women to discuss the topic,
and a lack of knowledge and skills to manage the disease; yet
almost two-thirds of those surveyed rarely, or never, referred a
patient for maternal depression (Breedlove & Fryzelka, 2011).
With a shift from paternalism to collaboration in
healthcare decision, responsibility for determining the presence of PTL symptoms is placed more squarely on the shoulders of the pregnant woman. The impact can be stressful,
leading to uncertain and risky healthcare decisions (Pierce &
Hicks, 2009). Women, faced with identifying and responding to preterm labor symptoms, have communicated the
profound sense of responsibility for preventing preterm birth
and the aloneness they have felt as they struggled with
when/if they should do something (Palmer & Carty, 2006).
Although there is a heterogeneity among those who are
reluctant to respond to PTL, the demographics of age and
parity have been directly associated with this reluctance, as
well as, younger women < 20, older women >30, and women who have already had at least one baby reportedly being
less likely to respond to PTL (McIntyre, Newburn-Cook,
The main sources for this integrative review were

research articles investigating the behavior, including medical
treatmentseeking behavior, of pregnant women who had
gone into preterm labor without recognizing and/or responding to the symptoms. Because this topic involved a strong
psychosocial component, research from psychology and social
science were necessarily included with keywords preterm
labor, reluctance, psychosocial, prenatal behavior,
teenage pregnancy, preterm labor factors, and mood
disorders used in combination or alone to refine the search.
More study is needed in the area of the pregnant womans
awareness of what constitutes preterm labor symptoms and
the actions she should take in response to the symptoms.
In an attempt to prevent preterm birth, timely recognition of PTL symptoms is essential; yet preliminary symptoms
can be intermittent, vague, and non-progressing, making the
womans task of recognizing the symptoms and accessing
healthcare all the more challenging. Because the womans
recognition of symptoms leads to the treatment aimed at
halting PTL, her response to symptoms is critical to the
outcome. Factors contributing to her reluctance must be
identified and addressed in order to increase her confidence
in being able to do her part in keeping the baby inside.
Despite the identification of high-risk pregnancies, 50% of
preterm births have been found to have low risk factors,
further complicating the roles for provider, the pregnant
woman, and her family (March of Dimes, 2011). Educating
women of the serious and potentially life-threatening or lifealtering possibilities of PTL and the risk factors unique to her
are important tasks of the childbirth educator.
Neural-Biological
The effect of increased circulating levels of stress hormones and maternal depression may predispose a woman to
PTL. The impact of increased stress hormones, corticotropinreleasing hormone (CRH) and cortisol, on the physiology of
pregnancy, as well as the effects of anxiety and depression
on the decision-making ability of the pregnant woman, may
trigger the initiation of PTL symptoms and influence the
reluctance to respond (Dayan et al., 2002). Research indicates that depression is greater at 32 weeks gestation than in
the previously regarded first month postpartum (Mosack &
Shore, 2006).
Jeannie Nicholson

Ethnicity
Ethnicity plays a role in PTL risk factors, descriptive language of symptomatology, and healthcare decision-making.
Because African-American women have PTL more frequently, understanding behaviors that increase their risks may contribute to improved outcomes. African American women use
pains and cramping more often than contractions in
their description of symptoms (Gennaro & Garry, 2008). The
awareness of specific word-use may provide understanding of
why instruction from health care providers was not heeded if
contraction was the terminology that had been used.
African American mothers are more likely to confer
with pastors, family/friends, a boyfriend, or coworkers before
seeking care, are less likely to report stress as a trigger for
PTL, or accept treatment for depression, despite conveniences of free transportation and daycare provision (Muzik &
Borovska, 2010). Ethnicity must be considered with caution
as its contribution varies according to the study and women
within an ethnicity do not always respond the same.
Denial/Concealment
Anxiety in preparing for the parenting role, as well as
preparing for labor and delivery, can aggravate the behavior
that leads to denial of symptoms requiring medical attention.
Friedman, Heneghan, and Rosenthal (2009) found denial
in women of all ages caused by substance abuse and fear
of prosecution for fetal abuse. Friedman et al. (2009) write
of a woman presenting in the emergency department with
seizures and found to be eclamptic; while another woman,
receiving cancer treatments, complained of sharp pains in
her private parts, unaware of her pregnancy (p. 177).
Mistaking contractions for fetal movement, and PTL
symptoms for gas pains, indigestion or the flu, women did
not think a mild discomfort could be the same thing as
what they considered a painful, serious contraction (Freston
et al., 1997). For some women, the thought of PTL is too
scary, and the notion is dismissed entirely; although denial
and concealment increase the risk of Neonaticide, murder of
the infant in the first day of life (Friedman & Resnick, 2009).
Inability to Discriminate
Because PTL could possibly be prevented when women
respond to signs and symptoms, what is concerning is the
disconnect between what is taught by HCPs and what
women perceive as symptoms requiring medical atten-
tion. Educational level and socioeconomic status have not

been found to influence a mothers ability to discriminate
symptoms (Freston et al., 1997), although researchers differ
concerning age-associated behaviors (McIntyre et al., 2009).
Typical PTL symptoms including changes in vaginal
discharge, low backache, and menstrual-like cramping were
considered normal symptoms of pregnancy to be discussed
at the next appointment. Vaginal infections were dismissed
as normal leukorrhea, while ruptured membranes were
mistaken as urinary incontinence, and the constant versus intermittent nature of contractions caused women to perceive
no threat (Palmer & Carty, 2006).
Provider Role
Provider or nurse dismissiveness of symptoms, rather
than positive reinforcement and focused instruction, has
been reported as having a deflating, or discouraging effect on
mothers, causing them to doubt their judgment concerning
future symptomatic episodes. Educating women in a variety of
settings on focused symptoms, as well preparing medical ofcontinued on next page

fice staff in how to elicit important information from women
regarding symptoms they are currently experiencing, has had
a positive effect in several studies (Papiernik et al., 1996).
Although providers have expressed a desire to assist
women in decision-making, there are gaps in what the providers believe the patient should know and what the patient
wants to know (Pierce & Hicks, 2009?; Leiferman, Dauber,
Heisler, & Paulson, 2008). When polled, the majority of providers believe women would be uncomfortable if asked about
their mental health, when, in fact, women have responded
that they would be relieved if their provider would ask them
about their mental well-being (Leiferman et al., 2008).
Table 1. Factors Related to Reluctance to

Report Symptoms of PTL
Reluctance Factors
Knowledge Deficit

Ethnicity

Health Provider Role

Psychosocial Factors

Neural-Biological Factors
Family Role

Denial/Concealment

Childbirth Educator
Teach s/s PTL Triggers using variety
of methods
Class discussion on word choices for
specific symptoms
Role play conversation with HCP on
difficult topics
Presentation of scenarios w/discussion
of healthy interventions
Stress Reduction Techniques
Identify solutions for meeting family
needs
Helping mother see baby as separate
from herself
Clear communication, with recognition and use of the

terms the woman uses to describe symptoms, acknowledgement and affirmation of her self-care efforts, emphasis on the
importance of calling at any hour, as well as the harm in the
delay of waiting until the next morning are teaching points
to use when caring for or teaching pregnant women.
Psychosocial
Past medical traumas have an impact on a womans
interpretation of symptomology. El-Bastawissi et al. (2003)
document the strong association of preterm delivery with a
history of stillbirths. A previous negative birth outcome may
compound the anxiety that accompanies the responsibility of
identifying preterm labor symptoms and notifying the health
care provider (HCP).
Untreated depression can lead to risky health behavior,

including missed prenatal appointments, lack of motivation
to follow medical advice, poor self-care that includes cigarette, alcohol, and substance abuse, self-medication and poor
nutrition (Ickovics, Reed, Magriples, & Westdahl, 2011), and,
if occurring early in pregnancy, increased likelihood of PTL
(Li, Liu, Odouli, 2009).
Because the discomforts of pregnancy can parallel
the symptoms of depression, it is important to screen all
pregnant women for depression every trimester, as well as
prepregnant women when they come in for medical care
(Bansil et al., 2010).
Knowledge Deficit
Women interviewed after delivering prematurely have
said they were unaware of the seriousness of the symptoms
they were experiencing. Prenatal care that has included intense, frequent education on lifestyle changes and symptom
recognition with follow-up has yielded excellent results and
serves as an example of the impact of teaching and nursing
care to improve maternal and newborn outcomes (Papiernik,
1985).
While prenatal classes have been shown to have benefits
including: increased self esteem, social support, and awareness for self-care and normal/abnormal signs and symptoms
in pregnancy; the topic of PTL has, either not been presented adequately, or has not been considered a possibility
or registered on the radar screen of womens perception
(Sercekus & Mete, 2010; Ickovics et al., 2010; Zauderer,
2009).
Shame/Embarrassment
Not wanting to overreact, women who have had a false
alarm in going to a provider or hospital only to discover
they have not been emergent, have adjusted their expectations or personal knowing to match those of their professional provider and have raised their level of what was
alarming (Palmer & Carty, 2006). Without help at home
and financial assistance, a womans ability to comply with
medical advice to go to bed may go unheeded, and the guilt
she feels for not doing all she can for this baby can increase
negative emotions.
Family Life on Hold

Going from an active life to an inactive life can be very
difficult work for the woman diagnosed with PTL symptoms,
as well as the awareness of financial responsibilities and the
needs of their other children. A grandmother or mother-incontinued on next page

law may be summoned to care for the other children, and
dad, if he is present in the home, takes on more domestic
duties than he has in the past. Calling the doctor will mean
calling my fianc for gas money to get to the clinic, and Im
thinking that at 35 weeks, this baby will be small but shell
be okay, (personal communication, October 14, 2011).
Childbirth educators can offer suggestions on productive
activities while a woman is on bedrest or limited activity, as
well as staying in touch by e-mail.
Encouraging womens efforts to care for

themselves, even when over-reacting,
will go a long way in teaching them how
to take care of their mental health
In conclusion, this patient populations struggles may
include: symptoms of depression, a knowledge deficit regarding significance, as well as recognition, of preterm labor
symptoms, lack of social support, fear of medical personnels
disapproval, and deliberate disregard for consequences.
Although literature is divided on the role ethnicity plays
regarding womens response, it is clear that ones ethnicity
influences perceptions and interpretation of symptoms, opportunities for support, and health-seeking decision-making.
Health care providers and childbirth educators can increase
their effectiveness by being sensitive to these issues.
Literature supports the vulnerability that pregnancy
brings to a womans life and that all women, throughout
their pregnancy, do better when they receive emotional
support (Dayan & Creveuil, 2009). Childbirth educators
are in the unique position to encourage positive mental
health behaviors that reduce the likelihood of depression.
The paucity of information concerning patient education
regarding behavioral health changes in nutrition, hydration,
activity, rest, stress reduction, and the importance of routine
prenatal check-ups can be addressed by childbirth educators
in various formats.
Childbirth educators have the opportunity to influence
the womans pregnancy experience by educating the pregnant woman and her family on PTL symptoms, as well as
procedure for getting in touch with their healthcare provider.
Encouraging womens efforts to care for themselves, even
when overreacting, will go a long way in teaching them how
to take care of their mental health. The childbirth educator

plays an important role in identifying, assessing and supporting emotional adaptive behaviors to pregnancy and birth, as
well as presenting in a simple and direct manner the topic of
preterm labor symptomatology.
Collaboration of obstetricians, health care providers and
childbirth educators could reap rich dividends as accurate
information, combined with the relaxed, supportive atmosphere of the childbirth education class unite to produce
improved patient outcomes.
Figure 1. Factors Contributing to a Womans

Reluctance to Respond to PTL
References
Breedlove, G., & Fryzelka, D. (2011). Depression screening during pregnancy. Journal of Midwifery & Womens Health, 56(1), 18-25. doi:10.1111/j.15422011.2010.00002.x
Dayan, J., Creveuil, C., Herlicoviez, M., & Herbel, C. (2002). Role of anxiety
and depression and onset of spontaneous premature labor. American Journal
of Epidemiology, 155(4), 293-301.
Earls, M. (2010). Incorporating recognition and management of perinatal
and postpartum depression into pediatric practice. Journal of American
Academy of Pediatrics, 1032-1038. doi:10.1542/peds.2010-2348.
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Sercekus, P, & Mete, S. (2010). Effects of antenatal education on maternal
prenatal and postpartum adaptation. Journal of Advanced Nursing, 66(5),
999-1010. doi:10.1111/j.1365-2648.2009.05253.x
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from http://www.marchofdimes.com/mission/prematurity.html
Virginia has been a childbirth educator for 20 years with a

special interest in preterm labor symptomatology, maternal and
paternal role development. As an FNP graduate student at the
University of Memphis, she expects to graduate in May 2012
along with her sons from seminary and high school. Married
with 3 children and 4 grandchildren, she enjoys reading, gardening, nature walks, and traveling.
Pregnancy Loss and Infant Death Alliance (PLIDA),
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New Baby in a New Country: Supporting

Local Immigrant Pregnant Mothers through
Moms Matter
Abstract: The Adopt-A-Mom program

of Guilford County, NC recently created
the pilot Moms Matter support group
to supplement the prenatal education
that pregnant immigrant women receive
through the Adopt-A-Mom program. This
report describes the preliminary outcomes of a formative evaluation of this
trial program and future implications for
childbirth educators to consider in the
development of pregnancy support programs for immigrant populations. Implementing culturally competent support and
prenatal education programs for pregnant
immigrant women should take priority
among childbirth educators and community health centers for the improvement
of maternal and infant health of US immigrant populations.
Keywords: cultural competence, pregnancy, immigrant, childbirth
education, prenatal care
Immigrant populations in the US are growing at a fast

pace, as new immigrant arrivals plus births in the US account
for a national population increase of 2.3 million people per
year (Camarota, 2005). Overall, 8.2 million children were
born to immigrant mothers over the past 10 years (Camarota, 2010). In response to the prenatal care needs of the
rapidly increasing immigrant populations in North Carolina,
Guilford Countys Adopt-A-Mom program helps increase
access to prenatal services. During the programs 20-year
history, more than 80% of the patient population has been
comprised of immigrant mothers representing over 100
nationalities (Adopt-A-Mom, 2010;

2011). In order to enhance prenatal
and postnatal education for these
immigrant mothers, the staff members of the Adopt-A-Mom program
started the Moms Matter group
in 2010. This pilot pregnancy
support group provides monthly
opportunities for expectant immigrant mothers to learn about childbirth topics, nutrition,
parenting, and the importance of seeking health care.
This article serves the following purposes for childbirth
educators: 1) describe the development of the Moms Matter support group; 2) illustrate the effects of incorporating
cultural competence and social support in childbirth education and complications that local immigrant mothers face
in obtaining postnatal care; and 3) suggest implications for
the future development of pregnancy support programs for
diverse immigrant populations. This article also illustrates the
points with a case study of Tara, an immigrant mother who
took part in the Moms Matter group. As immigrant populations continue to grow, implementing culturally competent
support and prenatal education for pregnant immigrant
women will take priority among childbirth educators and
community health centers in the US.
As immigrant populations continue

to grow, implementing culturally
competent support and prenatal
education for pregnant immigrant
women should take priority among
childbirth educators and community
health centers in the US.
Deborah Coble
by Sheryl L. Coley, MPH
New Baby in a New Country

Background of Prenatal Care and Development

of the Moms Matter Group
Prenatal care in developed countries such as the US
typically involve several visits (between 7-11) with health care
providers for pregnant women to receive counseling, screening for health risks, and procedures to prevent health complications (Kirkham, Harris, & Grzybowski, 2005). Prenatal
care has a long standing reputation in the US as a strategy
to improve maternal health and childbirth outcomes. The
Office of Womens Health reports babies of mothers who did
not access prenatal care are approximately three times more
likely to be born of low birth weights and five times more
likely to die than babies of mothers that received prenatal
care (US Department of Health and Human Services, 2009).
Historically, immigrants experience severe complications in accessing health care and related support services
due to such socioeconomic and institutional barriers as lack
of health insurance, transportation limitations, and language
barriers (Callister & Burkhead, 2002; Yu, Huang, & Schwalbert, 2005). Recent immigrant women in the US are also
less likely to utilize prenatal care due to cultural factors (e.g.,
reliance on family advice or traditional health care methods
provided by community midwives, prenatal care utilization only in emergency cases) (Callister & Burkhead, 2002).
Barriers to prenatal care for immigrant mothers are particularly disconcerting, as previous research conveys immigrant
mothers who do not receive prenatal care during pregnancy
are up to four times more likely to give birth to low birth
weight infants and seven times more likely to experience
preterm births (Lu, Lin, Prietto, & Garite, 2000). Immigrant
women who do experience positive pregnancy outcomes
due to the protective effects of native cultural practices (e.g.,
adherence to dietary practices and substance-free lifestyles of
indigenous cultures), could be at risk for adverse childbirth
outcomes as their native cultural practices diminish over
time while acclimating to US culture (Callister & Burkhead,
2002; Powers, Ramamaruthy, Schoelfield, & Matula, 2008;
Fuller et al., 2010).
The Adopt-A-Mom Moms Matter support group serves
two purposes: 1) to supplement the prenatal education that
the Adopt-A-Mom mothers receive from their doctors; and
2) to provide information for newborn care. The Adopt-AMom team recently learned about Sharon Schindler Risings
CenteringPregnancy approach as a model of pregnancy support programs, and incorporated elements of this approach
into the design for their pilot Moms Matter group. Risings
innovative approach proposed a change in traditional prenatal care services for the US general population of pregnant
women from one-on-one interactions between health care
providers and pregnant women to group settings where
women can ask providers questions in two hour group visits
(Bell, 2012). Women who have similar due dates complete
ten group educational and support sessions focused on
prenatal and neonatal care (Ickovics et al, 2003; Bell, 2012).
This interdisciplinary relationship-centered approach to
prenatal care focuses on building the mothers communication with providers while increasing learning and developing mutual support among the mothers (Massey, Rising, &
Ickovics, 2006).
During the Moms Matter sessions, a midwife, a nutritionist, and other health care and social service providers
talked to women about the following topics: childbirth,
sudden infant death syndrome (SIDS), shaken baby syndrome, stress management, breastfeeding, car seat safety,
nutrition, exercise, postpartum depression, emotional health,
and parenting. These topics resemble the main group session
topics used in CenteringPregnancy programs (Massey et al.,
2006). English-speaking immigrant mothers ages 18 and over
who participate in the Adopt-A-Mom program were invited
to attend the inaugural group in 2010. An average of nine
mothers participated in each session for the 2010 group. The
mothers received opportunities during each session to ask
questions of the facilitators and the other moms about these
topics and their experiences with pregnancy and prenatal
care procedures in a safe environment. This freedom to ask
questions and express their thoughts incorporates another
central tenet to this approach (Klima, Norr, Vonderheid,
& Handler, 2009; Bell, 2012). The main difference in the
Moms Matter support model from the CenteringPregnancy
approach lies in the development of this program as a supplement to the traditional prenatal care the mothers receive
and not a substitution for it. The program staff recognizes the
dire need for these participants to have as much access to
prenatal care education as possible; consequently the staff
designed this group as a means of additional support apart
from the mothers prenatal visits. Also, limitations in funding
for the trial program necessitated consolidating the ten sessions of the CenteringPregnancy model into seven sessions
for the 2010 group. The program still covered all of the main

topic areas despite a reduction in the number of sessions.
The Adopt-A-Mom team sought to employ cultural
competence techniques in this program to enhance trust
and respect between the staff and the participants as well
as to strengthen the mothers understanding of the topics
discussed during the classes. Spanish-speaking interpreters
from the Adopt-A-Mom program provided translation as
needed to the Hispanic Moms Matter participants. English
and Spanish handouts were available for the participants
during the sessions. The facilitators and Adopt-A-Mom team
asked participants to share certain experiences from their
family or country with other people in the Moms Matter
group, such as a December discussion on family plans for the
holidays. Even though some of these topics were not directly
related to childbirth, these conversations fostered respect
for the various cultures that the mothers represented. These
elements of the program served to facilitate a respectful
atmosphere for the mothers to freely communicate questions
and personal experiences. Finally, the Moms Matter staff
welcomed the mothers spouses and support people to attend the sessions with the mothers. This strategy allowed for
the mothers support people to gain the same knowledge as
the mothers in order to increase the quality of support to the
mothers during the classes and in their home environments.
These techniques pattern current recommendations for
culturally competent health care (Callister, 2005) to address
the educational and support needs for this ethnically diverse
group of mothers.
Results from the Interviews

As a student volunteer of the Adopt-A-Mom program,
I had the invaluable opportunity to interview seven out of
the fourteen moms in the 2010 inaugural group about their
experiences with the Moms Matter group and their subsequent access to health care. While all moms that participated in the program were asked for interviews, seven moms
agreed to meet with me. The interview group consisted of
five first-time mothers and two mothers with older children.
They represented the following countries: Nigeria (2 mothers), Ghana, Nepal, Mexico, India, and Jordan. These women
were between 20-40 years of age. All seven moms completed
the interviews in 2011 within four months after the inaugural group ended in December, 2010. Only two mothers
delivered by cesarean sections and experienced minor com-
plications during childbirth, and none of the seven mothers

babies experienced birth defects. The evaluation questions
focused on the following outcomes: 1) knowledge gained
and perceptions of experiences in the Moms Matter group;
2) postnatal follow-up in the health care system; and 3) postnatal contraceptive use. The following preliminary findings
from the interviews serve as part of an ongoing formative
evaluation of the Moms Matter group. This evaluation was
approved by UNC Greensboros Institutional Review Board,
and it will continue through 2012.
Knowledge Gained and Perception of the Moms Experiences

Based on the information gathered through the interviews, breastfeeding, shaken-baby syndrome, SIDS, and car
seat safety were the most commonly remembered topics
among the women. Five mothers breastfed for at least 5
months (four moms were still breastfeeding at the time of
their interviews), one mom breastfed 3 months, and only one
mom did not breastfeed. At the time of her interview, one
mother with older children explained that she was continually trying to enforce the new lessons she learned about
shaken-baby syndrome and car-seat safety in her household
with her husband. When I asked the mothers about topics
that future Moms Matter participants should learn, more
mothers mentioned breastfeeding as an important topic
than any other topic related to postnatal care. Other topics
included nutrition for the mother and infant-feeding after
childbirth.
Overall, all seven women interviewed had positive
comments about the information and support they had
gained in the Moms Matter group. The moms described the
staff and facilitators as nice, caring, and encouraging.
One mother stated they went out of their way to ensure
the mothers needs were met during the program. Another
mother mentioned how the staff really helped her to see she
was entering something special in becoming a mother. The
respect and patience of the staff and facilitators appeared
to transcend any cultural differences between them and the
mothers. Only one of three Adopt-A-Mom staff members
(not including the interpreters) and one of seven facilitators
were immigrants in comparison to the diverse population of
nationalities the mothers represented. One mother described
the Adopt-A-Mom staff and facilitators as awesome in her
high praise for the group and claimed this country does
not discriminate in providing programs like Moms Matter to help her and other mothers regardless of their ethnic
background. Even when the mothers were asked to describe

elements of the program they did not like or considered
unhelpful, the only negative comments the mothers gave for
the Moms Matter group related to the 10:00 a.m. class start
time and transportation issues. These issues extend beyond
the control of the Adopt-A-Mom team due to institutional
constraints.
A common benefit identified by the mothers was the
opportunity to share pregnancy experiences and learn from
the other mothers in the group about prenatal and childbirth procedures. One mother shared that talking to the
other mothers in the group relieved her fears about getting a
second ultrasound during her prenatal visit. Several mothers
also appreciated the interaction with mothers from other
countries. The mother from Jordan became best friends
with the Indian mother, and one Nigerian mother continued
communication with the Ghanaian mother after the group
ended. The common bond of undergoing pregnancy as immigrant mothers appeared to outweigh cultural differences
in the mothers, encouraging communication and support
to each other. (See Taras story for further insight into one
mothers experience with the Moms Matter group.)
Outcomes of Health Care Utilization

All seven mothers responded during the interviews that
they have pediatricians for their babies and have kept up
with the babies immunization schedules due to the babies
coverage under Medicaid. However, continuance of the
mothers care after childbirth became problematic after their
participation in the Adopt-A-Mom program ended. Only one
mother had a practitioner or health care clinic to go to when
someone else in the family gets sick, and only one mother had
an obstetrician/gynecologist (OB/GYN) at the time of their
interviews. The common barriers that prevented the mothers from seeking health care or establishing medical homes
were lack of money, current payment of additional childbirth
expenses (two mothers had birth complications that were not
covered by the Adopt-A-Mom program), and lack of insurance
or Medicaid. These financial constraints surfaced as the most
cited problem for the mothers not seeking health care; particularly since 1) six out of the seven mothers were unemployed,
and 2) they lack eligibility for long-term Medicaid and other
insurance after the expiration of their emergency Medicaid.
Financial barriers also prevented women from seeking contraceptive options after giving birth. Some mothers
mentioned they learned the importance of spacing between
births, but contraceptives, like an intrauterine device (IUD),

are too expensive for them. Only two women were able to
seek contraceptive options before the expiration of their
emergency Medicaid. One participant simply stated her
reason for not seeking further health care, If I have money,
I go. If I dont have money, I dont go. The local health
department inserted her IUD while her Emergency Medicaid
was still in effect, and she said that she will check the IUD
herself if she does not have money for her six-month followup appointment. (See Taras story which exemplifies these
barriers that immigrant women face in continuing health
care and seeking contraceptive methods.)
Discussion
These preliminary evaluation results give credence to
previous research findings that group pregnancy social support programs can greatly enhance the childbirth education
and support that mothers receive during pregnancy (Rising,
1998). Moreover, the preliminary results from this evaluation reflect how the incorporation of cultural competence
strategies is critical for childbirth educators and health care
providers to garner the trust and respect from immigrant
patients for maximizing the benefits that these women can
gain from these programs.
However, these interviews also show the need for
childbirth educators and health care providers to increase
support and education for encouraging health care utilization among immigrant mothers as well as any health care
navigation services available. The information gathered from
these interviews exemplify findings from previous research
regarding the lack of continuance of womens health care
among immigrant mothers who received prenatal care services (Jones, Cason, & Bond, 2002). This lack of immigrant
mothers continuance in the health care system could affect
the reproductive health of these mothers and subsequently
affect future birth outcomes. Therefore, childbirth education
should include information on financial means and program
assistance to help immigrant women to continue health
care after birth if these services are available through local
health and social services. Further development of the Moms
Matter group, such as more detailed education on post-natal
OB/GYN services, could help these mothers gain a better
understanding of health care services and decrease distrust
and misperceptions that immigrant women may have toward
health care providers or procedures. Because of the low level
of continuance of health care among these mothers, the

Taras Story
Tara is a 34-year-old, first-time mother from India
who had given birth to a baby boy. This mother describes
herself as a planning person, so she initially sought out
the Adopt-A-Mom program for assistance with prenatal
care services while she and her husband tried to conceive.
She became pregnant a few months later and completed
her in-take interview with the programs project coordinator to start her prenatal care visits under the program.
After the in-take interview, the coordinator invited her to
participate in the pilot Moms Matter group.
Tara mostly remembered learning from the Moms
Matter group about childbirth with the midwife, Braxton Hicks contractions, and breastfeeding. She was still
exclusively breastfeeding her son at seven months, and
she planned on breastfeeding for as long as she can, as
long as hes happy. Tara really liked how the class encouraged the mothers to support each other and answer each
others questions based on their personal experiences. She
is now best friends with a mother in the group from
Jordan. Their babies play together since they were born
a week apart. She also appreciated all of the support the
Adopt-A-Mom team decided to introduce education to the

next two Moms Matter groups on interconception care and
access to local public health services that provide assistance.
Results from future interviews with the next two groups may
reveal more themes for further investigation.
Prenatal care can serve as a critical

gateway for immigrant women into the
US health care system as an introduction
to future womens health services.
Prenatal care can serve as a critical gateway for immigrant women into the US health care system as an
introduction to future womens health services, and culturally competent childbirth education may greatly facilitate
their progression in the system. In this era of globalization,
cultural competence should be considered a requirement
rather than an option in the delivery of childbirth education
to immigrant mothers. Pregnancy support groups grounded
staff provided through the Moms Matter group. She described a poem as an example of the groups kindness that
encouraged her to feel like she was entering something
special in becoming a mother.
Tara ensured her son received all required immunizations to date, but finances and lack of insurance are the
biggest hindrances for seeking care for herself and her
husband. She experienced minor childbirth complications
with an infection which incurred unforeseen additional
costs. She expressed she was in tears when she saw her
hospital bill. Finances also influenced her choice of post
partum birth control.
While Tara was happy with the childbirth education
that she received, she would like future immigrant mothers to have information on system navigation to counsel
mothers on where to go to for health resources that are
low cost. Tara ended the interview expressing her interest
in volunteering with Adopt-A-Mom and offering to help
with translation and wants to be contacted for planning
of future programs.
in the principles of cultural competence hold promise for

enhancing prenatal and postnatal care education and maternal support among immigrant mothers. While funding for
these programs may limit specific tailoring of education for
all ethnic groups within a local population, universal principles of cultural respect can transcend barriers across ethnic
groups. Childbirth educators and community health centers
should therefore take full advantage of every opportunity
to develop and implement culturally competent pregnancy
support groups for the improvement of health outcomes for
immigrant mothers and their babies.
Acknowledgements
The author wishes to thank Dr. Tracy Nichols for her
guidance on the evaluation project and article and the
Adopt-A-Mom team for giving the opportunity to volunteer
with the program. This evaluation is an unfunded project; no
conflict of interest exists in this manuscript preparation or
the decision to submit this paper for publication.

References
Guilford County Coalition on Infant Mortality Adopt-A-Mom Program.

(2010). Interim Report, August 2010. http://www.co.guilford.nc.us/publichealth/divisions/?page_id=63
Guilford County Coalition on Infant Mortality Adopt-A-Mom Program.
(2011). Adopt-A-Mom participant data [Dataset].
Bell, K. M. (2012). Centering Pregnancy: Changing the system, empowering women, and strengthening families. International Journal of Childbirth
Education, 27(1), 70-76.
Ickovics, J., Kershaw, T., Westdahl, C., Rising, S. S., Klima, C., Reynolds,
H., & Magriples, U. (2003). Group prenatal care and preterm birth weight:
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Callister, L. C. & Burkhead, A. (2002). Acculturation and perinatal outcomes in Mexican immigrant childbearing women: An integrative review.
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Jones, M. E., Cason, C. L., & Bond, M. L. (2002). Access to preventive

health care: is method of payment a barrier for immigrant Hispanic women?
Womens Health Issues, 12(3), 129-137.
Callister, L. C. (2005). What has the literature taught us about culturally

competent care of women and children? MCN: The American Journal for
Maternal/Child Nursing, 30(6), 380-388.
Kirkham, C., Harris, S., & Grzybowski, S. (2005). Evidence-based prenatal

care: Part I. General prenatal care and counseling issues. American Family
Physician, 71, 1307-1316.
Camarota, S. (2005). Birth rates among immigrants in America: Comparing

fertility in the U.S. and home countries. Washington, DC: Center for Immigrant Studies. Retrieved from http://www.cis.org/articles/2005/back1105.pdf
Klima, C., Norr, K., Vonderheid, S., & Miller, A. (2009). Introduction
of CenteringPregnancy in a public health clinic. Journal of Midwifery &
Womens Health, 54, 27-34.
Camarota, S. (2010). Census: Population up 27 million in just 10 years.

Washington, DC: Center for Immigrant Studies. Retrieved from http://www.
cis.org/2010CensusPopulation
Lu, M. C., Lin, Y. G., Prietto, N. M., & Garite, T. J. (2000). Elimination of
public funding of prenatal care for undocumented immigrants in California:
a cost/benefit analysis. American Journal of Obstetrics and Gynecology, 182(1,
pt. 1), 233-239.
Fuller, B., Bein, E., Bridges, M., Halfon, N., Jung, S., Rabe-Hesketh, S., &
Kuo, A. (2010). Maternal practices that influence Hispanic infants health
and cognitive growth. Pediatrics, 125, e324-e332. DOI: 10.1542/peds.20090496.
Massey, Z., Rising, S. S., & Ickovics, J. (2006). CenteringPregnancy group

prenatal care: Promoting relationship-centered care. Journal of Obstetric,
Gynecological, and Neonatal Nurses, 35, 286-294.
Powers, G. C., Ramamaruthy, R., Schoolfield, J., & Matula, K. (2008).
Postdischarge growth and development in a predominantly Hispanic, very
low birth weight population. Pediatrics, 122, 1258-1265. DOI: 10.1542/
peds.2007-3453.
Rising, S. S. (1998). CenteringPregnancy: An interdisciplinary model of
empowerment. Journal of Nurse-Midwifery, 43(1), 46-54.
U.S. Department of Health and Human Services, Office on Womens
Health. (2009). Frequently asked questions: Prenatal care. Washington, DC:
U.S. Department of Health and Human Services. Retrieved from http://
www.womenshealth.gov/publications/our-publications/fact-sheet/prenatalcare.pdf
FEATURING A WIDE RANGE OF SERVICES Bereavement education and support materials

(perinatal, perinatal palliative, pediatric, and adult death)
Webinars (live and on-demand)
Consultation
Position statements
Tool kits
Educational materials for caregivers
~ Dont miss this exceptional educational opportunity ~
Resolve Through Sharing National Training Week
August 6-10, 2012 - Radisson Hotel, La Crosse, WI
Including 2 innovative workshops Advanced Skills in Perinatal Bereavement Care
Comfort Care
(4th annual in the Blueprint for a Perinatal Palliative Care Program series)
Yu, S. M., Huang, Z .J., Schwalberg, R. H., & Kogan, M. D. (2005). Parental
awareness of health and community resources among immigrant families.
Maternal and Child Health Journal, 9(1), 27-34.
Sheryl Coley is a doctoral student in the Department of Public

Health Education at UNC Greensboro. She has served as a
volunteer and research assistant for several community health
programs that focus on maternal and womens health including
the Guilford County Department of Public Health, Greensboro
YWCA, UNCG Center for Womens Health and Wellness, and
the Adopt-A-Mom program.
For details and to register go to

bereavementservices.org,
www.bereavementservices.org
email berservs@gundluth.org
berservs@gundluth.org or call 800-362-9567, ext. 54747.
Connections Between Prenatal

Exposure to Household Toxic
Chemicals and Autism?
by Abbie Goldbas, MS Ed JD
Abstract: This report examines the possibility that autism may be related to toxic
chemicals in commonly used household
products. Certain environmental chemicals are known to cause neurological
damage to fetuses; however we do not
know their connection, if any, to autism.
This discussion includes (a) autism; (b)
fetal vulnerability; (c) toxic chemicals
link to birth defects; (d) possible links
between chemicals and autism; (e) necessity for governmental regulations for
household chemicals; and (f ) the need for
research regarding a potential relationship between toxic household chemicals
and autism.
Keywords: toxic, household products, environment, autism, teratogens,
epidemic
Could There Be Connections Between

Prenatal Exposure to Household Toxic Chemicals
and Autism?
Autism is a neurological, developmental disorder. The
first symptoms become apparent in early childhood and
often last a lifetime. In most cases, by the age of three the
autistic child will demonstrate three core symptoms of
behavioral, cognitive, and affective irregularities: (a) reduced
ability to interpret emotions and intentions of others; (b)
reduced capacity for social interaction and communication; and (c) preoccupation with a single subject or activity
(Baron-Cohen & Belmonte, 2005). These symptoms affect

every aspect of being. While many autistic children develop
severe, disabling symptoms, including cognitive deficits for
which they require special education programs and full-time
care, many are not as debilitated. Because the symptoms
are so varied, with some children considered high functioning, the disorder is also referred to as autism spectrum
disorder (ASD) (Warner, 2011). The caretakers lives are often
disrupted as well. Additionally, autism affects far more than
the individual and their family: the medical profession, the
educational system, and adult care programs the entire
socioeconomic structures of our society have felt the impact
of this widespread disorder. The prevalence of autism is a
major concern because millions of dollars are spent on them
throughout our health care and educational systems (Knapp,
Romeo, & Beecham, 2009).
Health care professionals must have an understanding
and teach their clients about potential harms to unborn babies. An important consideration today is the possibility that
some of the chemicals we frequently use to clean our homes
or in our personal hygiene routines may be toxic. Are these
safe for the fetus?
Autism is now an epidemic in the United States. In
the past decade the incidence of autism has skyrocketed
from one in 1,000 children to 9.1 in 1,000 children. Boys
make up 80% of autistic children and 50% of all are alleged
to be mentally retarded (Centers for Disease Control and
Prevention, 2006). Landrigan, Kimmel, Correa, and Eskenazi (2004) have noted that generally, neurodevelopmental
disorders such as autism affect 5-10% of the four million babies born each year in the U.S. Further, from 1991 to 2001,
the rate of children who were diagnosed with autism in the
United States rose by approximately 1,700%.
Household Toxic Chemicals and Autism

There is increasing evidence which

indicates the possibility that fetal
exposure to toxic environmental
chemicals may be one of the many
contributing factors implicated in the
development of autism.
The etiology of autism is unknown. We do not know
what causes this neurodevelopmental disorder. Immunological, genetic abnormalities, infections, and metabolic factors
are all likely contributors (Stoltenberg et al., 2010). The recent increase in the numbers of autistic children may be due
to todays sophisticated diagnostic procedures, though these
are considered to account for only about 25% of the recent
numbers (King & Bearman, 2009). There is increasing evidence that fetal exposure to toxic environmental chemicals
may be one of the many contributing factors in the development of autism. Further evidence is being gathered in the
burgeoning medical field known as developmental neurotoxicology. This field of study examines the effects of early
chemical exposures on the developing brain (Stein, Schettler,
Wallinga, & Valenti, 2002). Neurotoxicologists have not yet
begun in earnest to examine common household products
for toxic chemicals as they relate to autism.
History
Autism was originally identified by Kanner (1943). He
named the syndrome autism (auto meaning self; ism meaning condition) because he saw that his autistic patients acted
in a self-absorbed manner. Kanner understood autism to be
biological. He observed that the children were intelligent
and the parents often had unusual characteristics similar to
their childrens. He thus determined that autism was to some
extent inherited.
Today, it is speculated that genetics may be linked to
about 35-40% of autism; autism is therefore moderately
inheritable (Stilp, Gernsbacher, Schweigert, Arneson, &
Goldsmith, 2010). As stated above, there are numerous other
factors which can combine to increase the chance of a child
developing autism. Eventually, a single cause may be found,
however more likely, there may be a combination of factors,
i.e., gene-environment interactions, as stated above (Stoltenberg et al., 2010). Gluten (GLU), dietary proteins, and
peptides have been proposed as possible causes (Vojdani,
Pangborn, Vojdani, & Cooper, 2003). Childhood Autism
Risks from Genetics and the Environment (CHARGE, 2011)
is a large, epidemiological study of thousands of children
in California. It has found that a familys proximity to the
freeway may be associated with autism. The renowned
British autism specialist, Simon Baron-Cohen, has recently
suggested that parents with similar careers are somewhat
more likely than the general public to have autistic offspring
(Warner, 2011). Croen, Grether, Yoshida, Odouli, and Hendrick (2011) recently studied records of mothers who were
medicated with antidepressant drugs during pregnancy. They
found that there may be a limited increased risk of ASD in
mothers who used selective serotonin reuptake inhibitors
during the year before delivery. They determined the greatest
risk for an autistic child was if the antidepressants were taken
in the first trimester of pregnancy. For many years there was
a widespread scare that exposure to prenatal and infant vaccines with thimerosal, a mercury-containing preservative, was
linked to autism. This has been determined to be untrue.
The Centers for Disease Control and Prevention (2010),
through their Vaccine Safety Datalink Project (VSD), have
conclusively stated that exposure to thimerosal-containing
immunizations is not associated with any ASD outcomes.
Diverse hypotheses are not new; what is new is the suspicion
that household chemicals may be a risk.
Fetal exposure to toxic chemicals

Since the 1970s, we have known about the dangers of
many environmental chemicals to children and fetuses. For
instance, for many years we have taken steps to eliminate
lead in our environment because lead causes neurological
damage, especially to children who ate lead in peeling paint
chips or inhaled in fine dust particles (CDC, 1997). Likewise,
we now know that neurological damage is related to pesticides, mercury, and arsenic exposure (Goldman & Koduru,
2000).
Health care professionals are concerned with two issues:
(a) the critical developmental periods of a child; and (b)
environmental risk factors. First, Arndt, Stodgell, and Rodier
(2005) have determined that the primary focus of current
research should be on the prenatal period. It has long been
clear that prenatal exposure to toxins such as pesticides can
be a risk for neurological damage, as stated above. This is

because fetuses are particularly vulnerable to toxins due
to their inability to metabolize, detoxify, and excrete toxic
agents. Fetuses and children experience rapid growth and
complex brain development which can be easily disrupted
(Rodier, 1995).
Secondly, toxic chemicals may indirectly cause neurological damage to the fetal brain leading to autism. Chemicals
which are perhaps linked to autism are already known to
be neurological toxins generally: lead, mercury, pesticides,
and certain medications (Stein, Schettler, Wallinga, &
Valenti, 2002). Now, toxic chemicals in household products are suspected to trigger autism because (a) their use
has increased dramatically over the past few decades along
with the incidence of autism, and (b) they are known to
disrupt neural development. Two common examples are:
(a) Polybrominated diphenylethers (PBDEs) are brominated
flame retardants often found in babies pajamas, sofas, and
carpet fabrics. These chemicals bind to the thyroid and alter
fetal development; and (b) Polychlorinated biphenyl (PCBs),
known to be hormone disruptors. They still linger in human
beings and the food chain even though they were banned
several decades ago. They were banned due to their toxicity causing brain abnormalities similar to the autistic brain
(Messer, 2010).
participants blood samples for chemical exposure are taken.

Researchers are working in coordination with other organizations across the country.
The most recent information germane to this discussion to come out of the CHARGE study was published in
2011. Hertz-Picciotto, et al. (2011) extracted blood serum
at certain intervals from 100 children from the larger study
group to determine the relationship between autism and
PBDE (flame retardant found in pajamas, see above). It was
concluded that there was no statistically significant association between ASD and PBDE. The limitations of the
study included (a) no blood serum tests were conducted to
determine PBDE content pre-ASD diagnosis, and (b) several
confounding factors which compromised the data should
have been eliminated. Additionally, at the UC Davis Health
System which is affiliated with CHARGE, it was found that
those women who did not take vitamins before and at least
during the first month of pregnancy were twice as likely to
have an autistic child (UC Davis Health System, 2011).
Amy Stratton
Recent Research
CHARGE (Childhood Autism Risks from Genetics and Environment) began in 2002 and is still ongoing.
This is the only major study which attempts to understand
whether there is a relationship between household chemical use and autistic spectrum disorder. Other recent studies either involve the same chemicals that we have known
for years to be toxic, or they do not pertain to autism. The
CHARGE study was launched by a group of scientists at the
University of California-Davis Center for Childrens Environmental Health (Hertz-Picciotto et al., 2006). Its purpose is
to study the genetic and environmental influences causing autism and developmental delays because there is so
little information regarding the etiology of these disabling
conditions. CHARGE is a large, case-control, epidemiologic
investigation. Approximately 1,500 to 2,000 children and
their parents are participating. Extensive personal histories
are gathered, physical and psychological tests given, and
It is not unusual for scientists to follow rather than lead

trends because of the time it takes to conduct dependable
research. Nevertheless, some who are less patient are observing our rampant and perhaps unreasonable use of household
chemicals about which we know very little. There is a grassroots movement in our country to return to the consumption of whole, non-processed foods and products which are
natural and chemical-free.
Today, the pollution in our homes is four to five times
higher than the outdoors (Marty, 2007). This is because of
the chemicals we use in our carpets and cleaning and personal hygiene products. Some urge us to discontinue their
use because it is known that many of these same chemicals
are implicated in cancer etiology and birth defects (van den

Hazel et al., 2006). We are further advised to use natural
products because there is a common sense notion that
the drastic increase in autism over these past 20 years may
somehow be related to the alarming increase in the toxic
chemicals we use in our homes.
There is a grass-roots movement in our

country to return to the consumption of
whole non- processed food and products
which are natural and chemical-free.
Examples of Known Toxic Chemicals in Cleaning
and Personal Hygiene Products
Amy Stratton
We describe four of the many chemicals which are

commonly used in our homes and which are already known
toxins. This information is based upon The United Nations
Globally Harmonized System of Classification and Labeling
of Chemicals (UNGHS) and the International Agency for Research on Cancer (IARC) which is part of the World Health
Organization. The Consumer Product Safety Commission and the Environmental Protection Agency use similar
definitions. Note that the US Food and Drug Administration
(FDA) has not categorized the toxicity levels of cosmetics
which contain toxic elements (Hollender, 2010).
PEGs PEGs, also known as ethoxylates and polyethylene glycol (those with eth in the ingredient names), are
found in cosmetics, shampoos, and hand soaps to create
foam and help water mix with oils. These are known reproductive toxins and may be linked to birth defects. Because
they are listed as cosmetics, the US FDA does not define
their level of toxicity (Hollender, 2010).
Parabens (butyl-, propyl-, ethyl-, and methyl-) These
are known as re-nostrogens which means they interfere with
the bodys hormone estrogen. Parabens are synthetic preservatives and disinfectants. They are used in products such
as deodorants, antibacterial ointments, shampoos, and sunscreens. Parabens are not only hormone disrupters but also
reproductive/developmental toxins. Parabens, like PEGs, are
categorized as cosmetics and therefore have no given level
of toxicity (Hollender, 2010). Jacobson and Jacobson (1996)
state that endocrine disruptors are environmental hazards for
neurodevelopment.
Phthalates These are used to improve plasticity in plastic containers and as solvents for fragrances. They are known
reproductive toxins and may cause birth defects (March of
Dimes, 2011). Phthalates are found in synthetic perfumes and
fragrances anything that has fragrance in the ingredients
label, including air fresheners, liquid soaps, and laundry detergents. They are also found in carpets and foam furniture (new
carpeting has 120-odd chemicals) (Marty, 2011).
Vinyl floors contain phthalates. Larsson, Weiss, Janson,
Sundell, and Bornehag (2009) were researching developmental disorders and asthma and accidentally found a relationship with vinyl floors and autism. In 2000, they interviewed
parents of 4,779 children between the ages of 1-6 years who
all resided in the same county in Sweden. The questions
included, inter alia, those about income, medical history of
all family members, and mothers cigarette smoking. In 2005,
a second questionnaire was completed by the same parents. In addition to the general questions above, they were
asked if any of their children between 2000 and 2005 were
professionally diagnosed as having autism. They found that
72 children had been diagnosed with autism, 60 boys and 12
girls. The results of the study show five statistically significant
variables which indicated autism: maternal smoking, male
sex, problems in the home with poor ventilation (condensation on windows), financial problems/low socioeconomic
level, and PVC flooring, especially in the parents bedroom.
During the second phase of the study, it was established that
the vinyl flooring was the source of the indoor phthalates.
Dioxins These are the most potent carcinogens
known to science (Marty, 2007). Dioxins cause birth defects,
immune system damage and cancer. Dioxins are found

in commonly used laundry detergents, liquid soaps, and
window cleaners (Snow, 2009). After extensive research,
nothing was found which stated dioxins were not toxic. The
World Health Organization (2011) considers dioxins to be
highly toxic and able to cause reproductive and developmental problems, damage the immune system, interfere with
hormones, and cause cancer.
Conclusion and Future Research

There are numerous books available for those who
seek non-toxic products or are at least interested in gaining a greater understanding of the chemicals we use. We
have cited Planet Home by Jeffrey Hollender (2010). He is
the co-founder of the Seventh Generation line of natural
products. It is an old and well-respected company which
makes popular natural products that can be found in many
supermarkets. This book and others give practical advice for
children and adults, including tips on using baking soda and
vinegar instead of ordinary products. Additionally, a great
deal of information can be found on the Internet.
The increasing incidence of autism over the past decade
has coincided with the prevalence of childhood asthma and
metabolic syndrome, especially in the United States and
United Kingdom. It is suggested that future research into the
relationships among these disorders may lead to epidemic
patterns and clues, and ultimately to more effective safety
standards for the chemicals we use (Curtin, Anderson, Must,
& Bandini, 2010).
Stein, Scheduler, Walling, and Valentine (2002) perceive
the possible relationship between the toxic household
chemicals and childhood neurological disorders. They propose that citizens and health care workers encourage policymakers and health officials to research toxic chemicals and
also create effective safety legislation for the industry, at least
for the unborn. This is because out of approximately 80,000
chemicals which are currently in commercial use, only 12 or
so have been sufficiently tested pursuant to the standards
promulgated by the Environmental Protection Agency
(EPA) for toxicity to the developing brain or nervous system
(Makris, Raffaele, Sette, & Seed, 1998). There are 2000 to
3000 chemicals registered each year (US EPA, 1998). Stein
et al. (2002) endorse government regulation because, as they
note, formal research studies take years and their results
often come after the fact.
Focus needs to be maintained on the ASD epidemic and

we must stay knowledgeable about the teratogenic effects of
toxins in the environment. Specifically, childbirth educators
need to stay informed so they can disseminate the precautions. Share new knowledge with pregnant families in classes
and/or by the use of informative brochures and videos.
Whatever evidence can be gleaned about the relationship
between fetal vulnerability to chemicals and developmental
disorders is helpful to reduce exposure. Finally, we all have a
responsibility to lobby for greater governmental testing and
standards to control of the use of toxic chemicals used in
homes.
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beincharge.ucdavis.edu/newsupdates.html
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Pessah, I., Hansen, R., & Bennett, D. H. (2011). Polybrominated diphenyl
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Publishers.

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children exposed to polychlorinated biphenyls in utero. The New England
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toxic chemicals and dietary peptides binding to lymphocyte receptors and
tissue enzymes are major instigators of autoimmunity in autism. International Journal of Immunopathology and Pharmacology, 16(3), 189-199.
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February 14, 2012, from http://www.marchofdimes.com/pregnancy/stayingsafe_indepth.html
Warner, J. (2011, August). Autisms lone wolf: Simon Baron-Cohen wants to

know, are autistic traits a predictable outcome of new marriage patterns?
Time Magazine, 78(8), pp. 44-47.
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Retrieved February 14, 2012, from http://www.thefreelibrary.com/Carp
et+highs+and+whoas%3A+are+you+walking+on+120+chemicals%3Fa0165577801
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Health. Retrieved February 20, 2012, from http://www.who.int/mediacentre/factsheets/fs225
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retardants as potential autism risk factors. Physiology & Behavior, 100(3),
245-249. doi. 10.1016/j.physbeh.2010.01.011.
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Health Perspectives, 103 (suppl.6), S73-S76.
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Abbie Goldbas practiced law for 25 years in upstate New York

where she specialized in Family Court law and child advocacy.
Her interest in autism stems from representing many hundreds of
children in court. She currently is a second-year Ph.D. student in
Health Psychology at Walden University.
ICEA Approved Workshops

Need certification? ICEA has approved a number of workshops for childbirth educators, doulas, nurses, etc.
Please visit the link below and sign up to get your certifications today.
http://icea.org/content/icea-approved-workshops
The Shifting Landscape
of Health and Medicine:

Implications for Childbirth Education
by Brian P. Hinote, PhD and Jason Adam Wasserman, PhD
Abstract: In this paper we briefly discuss

recent and ongoing transformations in
medicine and health care, along with the
ways that these changes affect professional groups like childbirth educators,
midwives, doulas, and other providers.
These shifts raise important questions
(and opportunities) for a variety of childbirth professions as they negotiate the
rapidly changing landscape of health and
medicine. Using a sociological perspective,
we connect various social and institutional shifts emanating from these broad
transformations, as well as discuss how
they have the potential to affect health
care professionals and practitioners across
various dimensions of childbirth education and care.
Keywords: medical sociology, sociology of childbirth, midwifery, doulas,
health care delivery, biomedical models
multiple social transformations are

radiating throughout American health
care delivery today.
Introduction
Health care delivery in the United States is undergoing significant changes. Writers from many disciplines have
struggled for many years to precisely describe the nature and
consequences of these broad transitions, but most agree that
these developments contain new and perplexing problems
(Beck, 1994, 1999). These shifts are critical issues in the areas
of health, disease, and the delivery of health services, and are
similarly important for those professions providing childbirth
care as a complement or alternative to professional medicine,
either independently or from within medicine itself. In this
paper we discuss some of the recent and ongoing health
transformations affecting childbirth educators and professional groups like midwives, doulas, and other providers.
More specifically, the clinical models of medicines golden
age (Porter, 1997; Starr, 1982) are increasingly mismatched
with many of todays health matters, from the types of
diseases most often affecting human populations to the
individual desires and concerns of patients themselves. This
mismatch manifests in virtually every aspect of medicine
and health care delivery, including, or perhaps especially,
the area of childbirth. As a result, professional medicine
becomes only one voice out of many different perspectives
on what childbirth should be and how it should be carried
out (e.g., medically managed hospital birth, home birth,
water birth, freebirth). At the same time, medicines power
is contracting, along with its dominant conceptions of what
is best for individual patients, expectant mothers among
them (Wasserman & Hinote, 2011). Increasingly, people turn
to non-professional sources for health information including the Internet and a variety of health gurus with varying
credentials, and patients increasingly enter the physicians
office with personal health philosophies developed from
The Shifting Landscape of Health and Medicine

complex health milieux. This fracturing of health knowledge
raises important questions (and opportunities) for a variety of childbirth professions as they negotiate the rapidly
changing world of health and medicine. In turn, it represents
an increasingly complex sociological terrain that childbirth
educators must nonetheless navigate.
This surging pluralism in every area of health is important for childbirth educators, midwives, doulas, and similar
providers for a number of reasons. First, because a new
pluralism challenges medicines claim to clinical monopoly
on definitions of health and how to achieve and maintain
it, these developments likely signal a large-scale rethinking
of how patients and practitioners conceptualize health and
well-being, including the various activities and rituals surrounding childbirth. Somewhat ironically, the same seemingly monolithic power base that initially quelled the historically
prominent voices of childbirth (i.e., midwives and other early
reproductive health providers) is now beginning to fracture,
permitting (re-)entry to many competing ideas of acceptable, healthy, and fulfilling childbirth experiences(Conrad &
Schneider, 2009; Kaptchuk & Eisenberg, 2001). These shifting ideas open up new and empowering reproductive and
childbirth options for women, a distinct break from social
control and medicalization processes historically employed
by physicians (Conrad, 2007; Parsons, 1951).
Along similar lines, these systemic changes may facilitate
new and valuable opportunities for professional development
among new types of childbirth providers, as well as opportunities for more established groups like midwives to further
expand. At the same time, these changes will probably
introduce new professional dilemmas as well, some of which
we briefly explore below. In short, the transitional character
of health care delivery in the twenty-first century affects
complementary, alternative, and non-medical practitioners
in a number of important ways. In what follows, we present
a sociological perspective of the underlying changes in the
landscape of health, and then discuss their implications for
childbirth education and practice.
Transformations in American Health Care

Delivery
Enlightenment rationality and the great advances of
industrialization and modernization were critical in elevating professional medicine to the prominence and prestige
that it enjoyed during the twentieth century. As these social
and economic processes continued to unfold, they transformed previous ways of life and reorganized entire institutions (Beck, 1994). As industry continually revolutionized
its modes of material production, science also improved
its capacity to produce verifiable knowledge, and medicine
morphed from a delicate blend of art and science into a
highly rationalized system of empirically verified diagnostic
and treatment paradigms. Put another way, the end result for
medicine was not only the technological ability to diagnose
and cure disease, but also an industrial way of thinking that
still dominates much of the medical profession (Adorno
1973; Adorno & Horkheimer 1977; Boltanski & Thvenot
2006).
This industrial model of care is important to our discussion because this paradigm is responsible for medicalized
approaches to pregnancy and childbirth (Ehrenreich &
English, 1978). During the first part of the twentieth century,
obstetrics aggressively wrested control of childbirth from
already existing non-medical practitioners that had overseen
births for many decades, and obstetricians conducted childbirth like never before, guided by the industrial biomedical
paradigm. The battle over childbirth and healing practices
more generally is beyond the scope of this paper (Barker,
1998; Brodsky, 2008; Conrad & Schneider, 2009; Kaptchuk
& Eisenberg, 2001), but at the turn of the twentieth century,
mainstream, regular medicine was organizing and professionalizing at a rate that outpaced other practitioners, and
in turn, pushed them to the periphery of practice. Organized medicine also claimed responsibility for the mortality
declines of the late nineteenth and twentieth centuries by
pointing to their own medical procedures, interventions, and
efficiency in defeating disease, conveniently overlooking
the fact that many of the twentieth-century mortality declines in the United States had already begun and even leveled off well before many of biomedicines technological and
pharmaceutical marvels ever reached human populations on
a large scale (see Dubos, 1959; McKinlay & McKinlay, 2009).
Still, medicines new industrial model of health care
delivery slowly built a foundation of power and authority

from which it would encroach upon greater and greater
shares of life, health, and of particular interest here, childbirth. Throughout the 1900s, more and more births took
place in hospitals (the industrial, health-producing factory),
which included more and more technology, and where more
and more profit could be extracted from the entire process.
For instance, in 1917 a midwife cost 7-10 dollars for a home
birth, including daily visits for at least five days; conversely,
physicians charged up to 30 dollars and only attended
the birth itself. Over time, professional medicine stripped
women of power, control, voice, and of childbirth itself
(Block, 2007; Brodsky, 2008).
This is not to say that many twentieth-century scientific
developments in bacteriology (e.g., germ theory, antisepsis,
silver nitrate, etc.), technology (e.g., ultrasound, in vitro fertilization (IVF), etc.), and other areas (e.g., cesarean birth in
cases of life-threatening conditions) are not laudable achievements that touch the lives of countless women in very positive ways. The events briefly described above spawned a new
kind of industrial thinking that reinvented medicine with
dramatic consequences for how women experienced, participated in, and owned childbirth (Brodsky, 2008). Beneath
the weight of vigorous professionalization combined with aggressive medical practices, childbirth was ultimately labeled
a pathological condition requiring vigilant management
by professional physicians within a large medical-industrial
complex (Budrys, 2005), rather than a natural life event. The
industrial model of thinking that we describe here is characterized largely by rationality, empirical confirmation, and the
general drive toward the human management of all kinds of
natural phenomena (including pregnancy and childbirth).
More recent developments suggest that this industrial
biomedical paradigm is reaching the upper limits of its own
success. First, the organization of the clinic as the locus of
treatment (and previously, cures) appears increasingly mismatched with the structure of todays most prevalent health
threats. That is, the industrial model fits well with the risk
profiles of infectious diseases. But with the epidemiological
transition, where chronic diseases become the most prevalent mortality risks (Omran, 1971), medicine enjoys much
less success, because the causes of these ailments are more
far more complex and multidimensional. Notably, the causes
of chronic illness include social and behavioral factors that
medical practice struggles to incorporate into diagnostic and
treatment processes. Similarly, the organization of contemporary healthcare (i.e., education, training, and reimbursement
all structured around acute interventions and doing things
to patients) is also tailored to this causal model of infectious
disease, which requires discrete, proximal, biomedical causes
(i.e., bacteria, fungi, or viruses) upon which to intervene.
That is, the institutional structures of medicine were also
built around an infectious disease model and are similarly
antiquated, as evidenced by crisis in multiple areas of health
care delivery (Hinote & Wasserman, 2013). Finally, the
industrial model denies (and very often simply fails to recognize) the importance of non-biomedical, social dimensions
of care that have always been important (Link, 2008; Link &
Phelan, 1995), but are particularly significant in the profiles
of chronic illness, and as we later discuss, in the childbirth
experience (Miller, 2009).
More specifically, the success of orthodox medicine in
treating infectious disease unmasked chronic illnesses as
major health risks, which have multifactorial social and behavioral causes. The causal complexity of these illnesses has
largely stymied medicine, whose vast industry (Starr, 1982)
was built upon the success of the relatively simple causal
model of infectious diseases, a class of disease that could be
treated biomedically without reference to social or behavioral
causation (even if those factors were in some way relevant).
However, the epidemiological transition not only represented
a shift in the landscape of disease, but also resulting shifts in
attitudes toward medicine (Hinote and Wasserman, 2013;
Wasserman and Hinote, 2011). When heroic medicine
eradicated entire diseases from entire populations, it largely
circumscribed the world of health and illness. But when its
approaches result in more modest disease management,
and when the relation of efficacy and cost seems so out of
proportion, people increasingly seek answers from other
sources of knowledge and they make decisions about how
to be healthy based on a variety of personal beliefs, including non-scientific social dispositions toward various lifestyle
practices (Beck 1992). In short, when no professional center
can claim verifiable success, multiple voices acquire relatively
equal influence and people choose based on social, political,
and personal persuasions.
The end results of these developments are slowly coming into focus, and are increasingly palpable if one examines
medicine as a social institution. Physicians are now experiencing processes of deprofessionalization (Cockerham,
2012; Ritzer & Walczak, 1988), including waning power and

authority in health affairs (Cockerham, 2005; Wasserman &
Hinote, 2011), decreasing professional autonomy and satisfaction (Zuger, 2004), and the decline of professional and
pricing control and independent private practice (Budrys,
2005). In addition, professional medicine, much of which
is still entrenched in the old, industrial, biomedical paradigm, experiences increasing impotence in combating (and
ultimately curing, as in previous eras) todays most pressing
health threats, many of which were ironically uncovered or
indirectly caused by the early success of this causal model.
Here we are referring to todays chronic disease threats, as
well as the new classes of drug-resistant strains of infectious
bacterial and viral disorders that patients often, paradoxically, contract while in medical facilities. Still other consequences of these transformations emerge in the areas of medical
education (Cooke, Irby, and OBrien, 2010; Hodges, 2010),
health care administration and reimbursement (Berenson &
Rich, 2010), and the structure of the clinic and medical divisions of labor (Wasserman & Hinote, 2012).
These transformations, which do not affect medicine
exclusively, suggest a shift out of industrial modernization
and into what some sociologists call a reflexive modernity
(Beck, 1994). The former is characterized by objective, verifiable knowledge and the ability to convincingly manage risks,
including those related to disease. But reflexive modernity
is born of the successes of industrial modernization, just as
medicines success at treating infection unveiled (or severely
elevated the prominence of ) chronic illness (and new classes
of more complex infectious threats). Reflexive modernity
is also about self-confrontation, where individuals, groups,
and institutions must pointedly address the problems of
industrial modernity, in part by reconsidering the ideas
and assumptions upon which it was built. In the end, the
fracturing of monolithic industrial medicine results in a new
pluralism of ideas with regard to health. An emerging theme
in the twenty-first century therefore concerns the complexity
of a world with such diverse perspectives on health and how
to achieve it, where any number of sub-cultural and personal
philosophies of health are legitimated and practiced, often in
the absence of objective verification of their effectiveness or
lack thereof.
Perhaps most importantly, the fracturing of professional
medicines monopoly on health knowledge permits (re-)
entry of complementary and alternative practices, including,
or perhaps especially, in the area of childbirth. Accordingly,

these socio-medical transformations arguably affect the work
of childbirth educators and midwives, doulas, and other
practitioners. But as reflexive modernity destabilizes the
power base of orthodox medicine and (re-)opens pathways
for other health professions and ideologies, it also requires
reflexive thinking and deliberate professional development
on the part of those practitioners. It is to these areas of
discussion that we now turn.
Implications for Childbirthing Practice

Just as the institutions discussed above are undergoing significant changes, so too are the professional groups
dedicated to childbirth education, midwifery, and other
childbirth practices outside of professional medicine proper.
This appears to be an exciting and opportunistic time for
these groups, as the power base of organized medicine, and
its near stranglehold of medical monopoly on health affairs
in general and upon childbirth more specifically, has begun
to wane. In other words, conditions now seem favorable for
an introduction (or in many cases, a re-introduction) of the
ideas and social, emotional, and physical health benefits surrounding childbirth options outside of allopathic medicine
proper. Most births today are hospital deliveries where medical authorities still supervise, chart, guide, and often induce,
childbirth. At the same time, and because biomedicine often
neglects much of what some deem important in the childbirth experience, many women actively seek alternatives to
this model, looking to find less clinical, more personal care
by turning to nurse midwives, electing to give birth at home
with the services of a midwife, and some (though a small
number) choosing to give birth at home with neither a physician nor a midwife present, called freebirth or unassisted
childbirth (Miller, 2009).
The point we wish to make is that the increasing availability of choices for women is in large part nested within
broader shifts in the structure of American medicine and
health care delivery, and in cyclical fashion, womens choices
and activism appear to promote changing contemporary
birthing trends (MacDorman, Mathews, & Declercq, 2012).
But over and beyond the idea of mere choice, in recent
years we have also witnessed a widespread redefinition of
the concept of health itself, even within biomedicine, from
something that refers simply the absence of disease or injury
towards a more multidimensional state of complete mental, physical, social, and emotional well-being (Cockerham,

2012). Increased attention to multiple facets of health and
life fits well with the less clinical and more individualized
childbirth options that many practitioners now offer and
that many women want. While presently these developments probably fall short of a complete paradigm shift, they
nonetheless signal opportunities for progress, reform, and
expanding professional boundaries for many individuals
and groups, as well as increased attention, shifting attitudes,
activism, and advocacy around a very important set of issues
for many women.
These shifting tides open up new options and new ways
of thinking in regard to childbirth, but they also introduce
new personal and professional challenges for those childbirth
professionals who retain relative independence from orthodox medicine, either in practice, philosophy, or both. For
example, as physicians and organized medicine increasingly
come up against their own limitations amidst the new pluralism of the contemporary health and childbirth landscape,
medical institutions may seek to co-opt those alternative
birth options to help shore up their own position as primary
childbirth providers in the U.S. Indeed, these processes
have taken place before. Hospice, for example, originated in

decided opposition to orthodox medicine, and was even antagonistic towards medicines aggressive end-of-life practices.
Over several decades, however, hospice was incorporated
into hospitals as well as reimbursement structures and referral systems. Paradis and Cummings (1986) show homogenization across the first decade of hospice, while Platt (2011)
shows its subsequent full-blown co-optation after Medicare
reforms in the early 1990s. In many ways, this was an accommodation on the part of medicine, a change in its attitude
towards aggressive treatment throughout the dying process
and its willingness to develop better palliative care. Access to
the established institutions of medicine also came in varying
degrees with new rules and regulations that constrained patient choices within limits acceptable to orthodox medicine
(though it has undeniably, and laudably, also ceded terrain of
its own in the process).
Tosh (2007) explains how similar dynamics played out
for early nursing, on the heels of medicines professionalization:
Nursingfound itself dependent on the approval of
medicine for its very existenceNurses were taught,
examined and employed by physiciansCrucially, nurses
were socialised early to be passive and subservientMedical education by contrast encouraged independence and
autonomy (p. 69).
Jo High
While much has certainly changed since Florence

Nightingale, many nurses continue to report being plagued
by the handmaiden image and professional subordination
to physicians. This is not to say that nurses do not participate in clinical decision making. Rather, the more overt and
increasingly independent nursing participation tends to
emerge in specialist clinical settings or advanced, specialized
nursing fields.
Similar developmental trajectories appear already in
motion in obstetrics and labor and delivery. Miller (2009)
notes the recent emergence of mother-friendly hospital
facilities and the deliberate incorporation of certified nurse
midwives (CNMs) into hospital births. They usually hold
Bachelor of Science degrees in Nursing and Masters degrees
in Nurse-Midwifery and account for about 95 percent of
midwife-assisted childbirths. CNMs could represent one
already medically co-opted professional group (Miller goes
on to distinguish CNMs from Direct-Entry Midwives that
often oversee births outside of hospitals, at freestanding birth

centers, or in the home i.e., outside of organized medicine). While hospital trends are likely in part a response to
increasing consumerism among patients, we point out that
these arrangements also ensure that medical facilities and
their medically trained personnel maintain their profit-share
of childbirth, perhaps reflecting in some part this phenomenon of co-optation.
Our intent here is not to manufacture a divide between
medically certified midwives and those outside of biomedicine (or any other providers), or to say that such professional
integration is desirable or undesirable. Miller (2009) notably
points out the positive effects of CNM integration, including changing birth norms, advocating for family members
in delivery rooms and support for breastfeeding mothers,
and paving the way for doulas. Rather, we simply emphasize
that nascent groups seeking to independently professionalize
should probably consider these issues. Still, as the fractured
landscape of health and illness, including childbirth, affords
opportunities to partner with orthodox medicine, complementary and alternative childbirth practitioners need to
engage in active, deliberate negotiations with full recognition
that orthodox medicines willingness to map them onto the
terrain of the medical industry is not likely a wholesale endorsement of their ideologies, but rather a compromise. This
is not to say such a compromise is a bad thing, but rather
that practitioners should probably recognize these developments for what they likely are: an appeal and response to
an increasingly individuated and active consumer base, and
a move that does not necessarily represent a fundamental
shift in thinking on the part of the industry. In the end, those
practitioners working from truly alternative conceptions of
childbirth and wishing to provide truly alternative and individually tailored childbirth experiences should be especially
cognizant of the potential for co-optation, particularly when
legitimacy issues, prestige, and financial enticements come
with it.
In conclusion, multiple social transformations are radiating throughout American health care delivery today. While
more specific medical and systemic implications of these
shifts are discussed elsewhere (Hinote & Wasserman, 2013;
Wasserman & Hinote, 2012), in this paper we suggest the
probable consequences of these developments for the work
of midwives, doulas, and other childbirth professionals. We
specifically mention the work of midwives as one promi-
nent example, but as we mention above, doulas and similar

childbirth groups should also consider the sociological issues
identified and discussed. With expanding pluralism in the
field of childbirth and increasing diversity of patient expectations with regard to birth experiences, childbirth educators
also have increasingly complex terrain to navigate, some of
which we begin to map. The insights derived from the sociological perspective we present in this paper can help connect
various social and institutional shifts emanating from broad
transformations in medicine and health care, as well as show
they have the potential to affect childbirth practitioners and
educators alike.
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Brian P. Hinote, PhD is Assistant Professor of Sociology at Middle

Tennessee State University, where he is a specialist in health and
medicine. Professor Hinotes recent research examines various
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Graduate, Honors, and Aging Studies Faculties, and is also a
faculty member at NHC HealthCare in Murfreesboro, Tennessee.
Jason Adam Wasserman is Assistant Professor of Bioethics at
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Psychoneuroimmunology,
Stress, and Pregnancy
by Jennifer B. Crosson, EdS MEd
Abstract: Stress experienced by pregnant

women can influence pregnancy outcomes
and place pregnant women at greater risk
for illness. Stress during pregnancy can
also put women at increased risk for preterm birth, low birth weight, and hypertension. Furthermore, babies exposed to
prenatal maternal stress could have later
physical, intellectual, and behavioral
difficulties. It is important to note that
racial or ethnic minority pregnant women
appear to have challenging pregnancy
outcomes that are not associated with
stress.
Keywords: psychoneuroimmunology, stress, immune response, pregnancy
risk, ethnic disparities
The immune system causes physiological responses

when humans are exposed to stress. The immune system also
changes when women become pregnant, putting pregnant
women at greater risk for infections. In contrast, pregnancy
can also improve womens symptoms from pre-existing illnesses like arthritis or multiple sclerosis. It is important for
expecting women to know that stress during pregnancy is
not good for babies and might cause later physical, intellectual, or behavioral problems for babies or increase risks
for preterm birth, hypertension, smaller-sized babies, and
lower birth weight. Pregnant women in racial, ethnic, and
lower economic groups can have poor pregnancy outcomes
which are not caused by stress, but caused by feelings of
discrimination (Christian, 2012; Fetzer, 2011; Shannon, King,
& Kennedy, 2007).
Allostasis and Human Immune Stress Responses

Allostasis is the human bodys effort to cope with stress
when individuals are strained and trying to maintain balance.
This effort engages the bodys psychoneuroimmunological system, which can cause helpful or harmful physical
responses in persons emotional, cardiovascular, intellectual,
endocrine, or immune systems. These physical responses
are part of an interactive feedback loop that releases stress
hormones such as norepinephrine, adrenocorticosteroid hormone, and cortisol when persons experience stress. Changes
in these hormones can cause changes in the body. Stress can
increase blood pressure and heart rate, decrease the appetite,
and diminish thinking abilities. Stress also can lead to slowed
motor responses, decreased weight, difficulty sleeping,
fearfulness, and decreased sexual behaviors. Finally, stress
makes individuals vulnerable to upper respiratory infections,
can reduce the effectiveness of vaccines, and slow the healing
of wounds (Christian, 2012; Mulder et al., 2002; Shannon et
al., 2007).
Immune Stress Responses and Pregnancy

Womens socio-economic status (SES), education level,
age, readiness for pregnancy, emotional health, relationship
status, concern about pain during delivery, and previous experiences with pregnancy and childbirth can affect pregnant
womens stress levels and outcomes of their pregnancies.
Pregnant womens stress and feelings of anxiety can cause
harmful physical responses and create stress hormones,
which cross the placental barrier into the unborn baby. These
stress hormones can also cause early contractions and onset
of labor, starting premature delivery (Christian, 2012; Mulder
et al., 2002).
In each trimester of a pregnancy, there are changes that
occur in pregnant womens systems. In fact, changes within
pregnant womens immune system can begin 12-weeks into
pregnancy impacting pregnant womens emotions, memory,

thinking ability, sleep, and attentiveness. Sometimes in the
second and third trimesters of pregnancy, increases of stress
hormones of can stimulate premature labor. It is interesting
that approximately four days after delivery, womens stress
hormones lessen to pre-pregnancy levels (Christian, 2012;
Fetzer, 2011; Shannon et al., 2007).
Stress-Induced Diseases of Pregnancy
Brittany Marks
Emotional stress, anxiety, and depressive feelings during

pregnancy have been associated with increased risk for Preterm birth (PTB), hypertensive diseases of pregnancy (HDP),
low birth weight (LBW), preeclampsia, spontaneous terminations of pregnancies, difficulty with labor and delivery, hemolysis, elevated liver enzymes, and low platelet syndrome.
In fact, changes in pregnant womens feelings of stress might
help to predict PTB since pregnant womens emotional attachment to the unborn baby gets more powerful closer to
birth. Greater sensitivity to stress reduces pregnant womens
Methods for Pregnant Women to Increase

Their Wellness and Reduce Stress Levels
Wellness for Expecting Mothers
Eating
Eat well-balanced diet
Reduce fatty food, sugar, caffeine
Beware of shellfish
Drink fluids
Medical
Be careful taking medication
Take prenatal vitamins
Get flu vaccines
Activity
Give up drinking, smoking, using drugs
Get regular exercise
Reduce stress
American Pregnancy Association, 2011; Cleveland Clinic,
2011; Fetzer, 2011
Methods for Practitioners to Help Stressed

Pregnant Women
Tips for Professionals
Early identification of stressed or anxious pregnant
women
Give immediate care for preeclampsia, gestational
hypertension, nausea/vomiting
Intervention by Professionals
abilities to protect their unborn babies. Therefore, if pregnant women remain more sensitive to stress, they might be
at greater risk for PTB. It is important to note that hypertensive diseases of pregnancy and stress have been found
to contribute to fetal and maternal death (Christian, 2012;
Glynn, Dunkel-Schetter, Hobel, & Sandman, 2008; Mulder
et al., 2002; Shannon et al., 2007).
Maternal stress also affects development of human
fetuses. Infants exposed to maternal stress, depression, and
anxiety demonstrated shorter attention spans, disordered
sleeping patterns, greater irritability, less range of facial
Encourage creation of social and family support

network
Consider religious and spiritual needs
Use different mediums: telephone, home visits,
classes, group support.
Dalmida et al., 2010; Glynn et al., 2008; Leeners,
Neumaier-Wagner, Kuse, Stiller, & Rath, 2007

expressions, decreased appetites, and lower scores on infant
development tests. Stress during pregnancy was also found
to lead to depression, schizophrenia, difficulty developing
language and social play skills, and attention deficit/hyperactivity disorder in offspring (Huizink, 2000; King et al., 2010;
King & Laplante, 2005; Mulder et al., 2002; Parcells, 2010).
Ethnic and Cultural Disparities, Stress, and

Pregnancy Outcomes
Brittany Marks
Over the past 50 years, women of different races and

ethnicities have had worse pregnancy outcomes, including
PTB, LBW, stillbirths, and infant mortality. In the United
States, greater quantities of PTB have been connected to
racial and ethnic minority status. Interestingly, pregnant
women of African and European descent living in other
countries than the United States also had varied rates of
PTB. African American women have greater rates of PTB
than do Asian, European, and Hispanic American women. It
is important to recognize that PTB can cause infant deaths.
Infants who survive PTB might have greater risk for cerebral
palsy, mental retardation, learning disabilities, and nervous,

gastrointestinal, respiratory, and immune problems. African
American mothers might also have greater rates of LBW
leading to more infant deaths during the first year of life.
Ethnic and racial minority birth rates have been possibly associated with lifetime feelings of racism, anxiety, depression,
stress, and socio-economic status (SES) (Christian, 2012;
Gennaro, Shults, & Garry, 2008; Giscombe & Lobel, 2005).
Racial minority standing and chronic stress have combined influences on womens emotional and physical health.
African American women who felt racial discrimination and
experienced greater levels of crime in their neighborhoods
had more feelings of anxiety, depression, poor self-esteem,
and reduced social support. Additionally, African American
women who were exposed to stress and social discrimination
throughout their lives had greater risks for weaker reproductive, immune, and endocrine functioning and poor birth outcomes (Christian, 2012; Giurgescu, Dancy, Zenk, & Szalacha,
2009; Nkansah-Amankra, Luchok, Hussey, Watkins, & Liu,
2010).
Acculturation, believed to increase awareness of racial
stereotyping, has negatively affected pregnancy outcomes of
ethnic minority women. Recent U.S. Hispanic immigrants
have had better pregnancy outcomes than ethnic minority
women who have been in the United States for longer periods. Protection from poor birth outcome reduces the more
Hispanic women become acculturated in the United States.
Highly acculturated Hispanic American (HA) women had
almost two times the rate of PTB than lesser acculturated
HA women (Coonrod, Bay, & Balcazar, 2004; Chasan-Taber
et al., 2008).
Conclusion
In summary, stress creates immune system responses
that negatively affect pregnant womens health and increases
risk for negative birth outcomes. It is important to identify
that stress can impair unborn babies emotional, cognitive,
and physical development. Finally, practitioners should
provide assistance for pregnant women of ethnic and racial
minorities to reduce stress to decrease poor birth outcomes.
Leeners, B., Neumaier-Wagner, P., Kuse, S., Stiller, R., & Rath, W. (2007).
Emotional stress and the risk to develop hypertensive diseases in pregnancy.
Hypertension in Pregnancy, 26(2), 211-236. doi: 10.1080/10641950701274870
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Dalmida, S. G., Robertson, B., Carrion, M. M., Thompson, W., Erskine, N.,
Scruggs, N.,Sniderman, M. (2010). Spirituality, religiousness, psychosocial
factors, and maternal-infant outcomes in Latina mothers. Southern Online
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Jennifer B. Crosson is a certified school psychologist who has

worked with students, ages 4 to 22, for almost two decades. She
is presently employed in the DeKalb County School System as
a school psychologist, is a member of the Georgia Association
of School Psychologists, and is working on her PhD at Walden
University in the area of Health Psychology. She has also worked
as a special education teacher in general and psycho-educational
settings.
Call for Papers

We are seeking articles for the Summer 2012
issue on Complementary and Alternative Therapies
in the Childbearing Year. Please consider writing
a feature or practice article. If you would like assistance developing a paper, email us and we will
be glad to help.
Please, consider sharing your knowledge and
expertise with ICEA members.
The deadline for the Summer 2012 journal
is May 15, 2012
Email your paper to editor@icea.org
Author guidelines can be found at http://www.
icea.org/content/information-journal-writers
Practical Considerations in Preparing for a
Twin Delivery with Expected

Death of One Twin: Isaac and Liam
byTammy Ruiz, RN
Abstract: Birth education is helpful for

nearly everyone, but it becomes crucial
for complicated cases such as multiple
gestations or situations where the baby is
gravely ill. Much of the preparation for a
palliative care delivery is done before the
day of delivery and can be integrated into
prenatal education. The following case
study will give real-world examples of the
tenets of Perinatal Hospice. Given that
Perinatal Hospice programs (given in a
medical/nursing model, by a doula or via
peer support) are becoming more active
and requested, it is important childbirth
educators are familiar with some of the
commonly seen processes of palliative care
births.
Keywords: Perinatal Hospice, Perinatal Palliative Care, anencephaly,
twin death at birth
Perinatal Palliative care focuses on creating a relationship with parentsthe relationship itself offers the potential for healing at a time of the babys living and dying
(Limbo, Peck, & Toce, 2009, p. 1). I have found this quote
from Limbo and colleagues to be very true. I coordinate
a Perinatal Bereavement and Palliative Care program in a
medium-sized hospital in the Mid-Atlantic region of the US.
In this paper, I will illustrate for birth educators some of the
practical aspects of preparing for a twin delivery in which
one twin would need routine care, and the other would need
hospice care.
Our Program
We have had an organized system of Palliative Care/
Perinatal Hospice support since 2005 and have had 28
women/ families request and receive this service.
Some of the tenets central to effective Perinatal
Hospice incorporated into this case are:
validation of the babys life and personhood
empowerment of the couple to direct their childs
care
anticipatory guidance
helping parents frame the experience with reachable goals
written plan of care
plans for memory making at birth
involving extended family and others
reaching out to new support networks
hospital preparedness
coordinating pre-admission expert consultations
(Neonatology, Lactation)
avoiding separation of baby from parents
validating the parental role in the midst of the
whole experience
follow up
Our program works closely with Lactation Support and
our Childbirth Education program is run by the Lactation
Support staff. This collaboration results in tightly integrated
care. Our system of care and preexisting working relationships becomes pivotal in the example case presented.
Introduction to the Family and Beginning Our

Journey Together
Sandra was a 28 year-old old prima gravida who learned
she had a twin gestation at her first prenatal appointment.
After initial excitement and anticipation of two babies,
she then learned one of the twins was anencephalic. The
incidence of anencephaly is 1 in 1000 pregnancies in the
United States (Gold, 2007). Sandra became aware of the
perinatal palliative care service. These services give the health
care provider a chance to express shared value in her sons
life. Sandra was acknowledged for her prerogative to make
pivotal plans and decisions about how she and her husband
Sam would parent both of their children before, during, and
after their birth.
At one of the midwifery appointments soon after the
diagnosis of anencephaly, the factors involved on the day
the boys were born were discussed. The family was given an
outline of a Palliative Care Birth Plan (University of North
Carolina Center for Maternal and Infant Health, 2012). This
fill-in tool is intended to be a flexible way to assess and assist
parents in identifying their preferences and provide documentation.
Throughout the rest of her pregnancy, Sandra spoke
with the center via phone and met face to face many times.
During those meetings, medical questions were addressed
including whether Isaac might experience pain at birth, but
more often issues considered were ones any well-prepared
Childbirth Educator could discuss. She talked about the
experience with family/friends, arranging private Childbirth
classes, photography at birth, journaling, spiritual support
ideas, postpartum room preferences, mementos to make at
birth, funeral ideas, pre-existing relationships with others who were affected by this experience, and many other
similar topics.
Studies of parental reaction to care at the time of death
reveal a lack of emotional support or frank insensitivity
(Gold, 2007) to be the most frequent complaint of care
Conversations about the most mundane of details (i.e. what
clothes they will wear after birth) can quickly become intense
and elicit a great deal of emotion. It is important those interacting with the parents have the capacity to deal with the
topic at hand. They need to expect raw and intense emotion
and remain calm and understanding.
Sandra was encouraged to discuss many things she

could do during her pregnancy to assist in coping, commemorating, and preparing. She contacted a mother who suffered
an expected death of a baby at term. This mother offered to
be a peer companion to Sandra on her journey. Sandra did
a belly mold (as well as other expressions of art), arranged
for special clothes and blankets for the boys, interviewed
photographers, consulted lactation specialists, and participated in Yoga. Additionally, she sought out both informal
and professional levels of support, including private birth
education. Private birth education is considered preferable
to traditional community childbirth education class (Sumner,
Kavanaugh, & Moro, 2006).
Sandra had questions about the possibility of organ /
tissue donation, and the concern she would have to make a
decision was burdensome. As stated in A Gift of Time Organ
donation from a newborn is possible less often than is popularly believed (Kuebelbeck & Davis, 2011). Because Isaac
was expected to be much less than the minimum weight for
tissue donation, he would not be eligible to donate. Knowing
no firm decision needed to be made provided some relief.
Both sets of grandparents came for a private tour of
the hospital with added explanations of what they might
expect on the day the boys were born. Visitors can often find
a hospital confusing when they see it for the first time and
that confusion can cause unnecessary stress. Private tours
are arranged for all Palliative Care families and siblings are
encouraged to come for the tour. There are added benefits of
introducing family to staff encountered during the tour.
Jeannie Nicholson
Twin Delivery with Expected Death of One Twin
Twin Delivery with Expected Death of One Twin

The Delivery
The day of delivery came at 35.5 weeks gestation with
spontaneous labor. A Cesarian section was planned. A highquality still-camera was put into the Operating Room, but
we were unprepared when Isaac cried loudly at birth. This
glitch was a reminder to have video-capable cameras at all
Palliative Care deliveries. Sandra and Sam saw both boys at
delivery, but as healthy-but-tiny Liam went to the NICU,
Sandra focused all her energy on Isaac. Her bed had barely
stopped rolling from the OR when she reached out for
Isaac. What happened next left all the professionals baffled,
astonished, and thrilled Isaac did an amazing breast crawl
and was not happy until he had nestled himself between her
breasts and suckled.
Mom, Dad, and baby had a respected and supported
place to meet one another, and none let the surgical delivery
impair the process. Palliative care deliveries are sacred
parenting and giving parents a safe place to parent. Isaac
stayed safely nestled between Sandras breasts in recovery
and through her transfer to the Mother Baby / Postpartum
unit.
The arrival of Rosanne, the photographer allowed
pictures of Isaac with grandparents and dad and both babies.
These photos would be a treasured memory of the fleeting
moment where all of the men in this family were in the same
place at the same time. Photographs and memento making have been cited as two specific items parents appreciate
about the delivery long after the birth (Gold, 2007). Sandras
strong desire to keep Isaac close, breastfeed him if possible,
and prepare for Liam to breastfeed, made her need for Lactation support crucial. Her preparation ahead of time helped
her mother Isaac in a way she found meaningful. She was
then able to shift focus to caring for and breastfeeding Liam
when the time came.
Liam was released from the NICU sooner than we
expected and was able to join Isaac while he was still
alive. These moments were very precious. Isaac died in his
mothers arms nine hours after the boys were born. Sandra
waited to do Isaacs bath until the next day. The physical
process of bathing took on a sense of ritual for her. Responses to such intense experiences are very individual. It is
helpful to be sensitive to parents reacting with unexpected
intensity over one particular aspect of care, and this occurred
when the time came for Isaac to physically leave his mothers
room This challenge had a dear and loving resolution when

a friend was able to carry Isaac out of Sandras room in her
arms. As with anything in life, we learn as we experience. In
Liam and Isaacs birth, and Isaacs death, there were things
we wish had gone differently. Despite many photos being
taken, there was not one with all four of them in it.
When working with a mom who is expecting her child
to die at birth, she may ask how we will know what to do. I
often say the baby will tell us. Sandra shared she learned to
Believe in your child. Isaac surprised all of us, and we were
surrounded by the right people who let him shine.
The level of involvement a Birth Educator has in the
preparation for and planning of a palliative care delivery will
depend on parent requests, level of the educators expertise,
the parents team, and other factors. The simple willingness
to be with the family at this sacred time can be a healing gift
which will assist them, not only at the time of the birth, but
with how they process the experience for years to come.
References
D Ameida, M., Hume, R. F., Lathrop, A., Njoku, A., & Calhoun, B. C.
(2006). Perinatal hospice: Family-centered care of the fetus with a lethal
condition. Journal of American Physicians and Surgeons, 11(2), 52.
Limbo R, Toce S, & Peck T. (2008/2009). Resolve through sharing position
paper on perinatal palliative care. La Crosse, WI: Gunderson Lutheran
Medical Foundation, Inc.
University of North Carolina (UNC) Center for Maternal and Infant Health.
UNC perinatal palliative care support program. Retrieved January 2012,
from http://mombaby.org/PDF/UNCPerinatalHospiceBirthPlan.pdf
Gold, K. J. (2007). Navigating care after a baby dies: a systematic review
of parent experiences with health providers. Journal of Perinatology, 27,
232-233.
Sumner, L. H., Kavanaugh, K., & Moro, T. (2006). Extending palliative care
into pregnancy and the immediate newborn period. Journal of Perinatal and
Neonatal Nursing, 20(1): 114.
Kuebelbeck, A. & Davis, Deborah P. (2011). A gift of time. Baltimore, Maryland: Johns Hopkins.
Tammy Ruiz, RN has been a Nurse in Maternal Child Health

for over 26 years with experience in Pediatric & Neonatal ICU
(with brief detours into adult hospice and Clinical Pastoral care).
She has specialized in Perinatal Bereavement and Palliative care
for the last 7 years and has taught on these topics regionally,
nationally and to international students in addition to creating
an educational video on Perinatal Hospice care that has been
seen in 70 countries. She serves on the Board of Pregnancy Loss
Infant Death Alliance.
Using Technology to
Connect Families
Should We?
by Dr. James Edward Pugh, BSc MBBS and Lori Ives-Baine, RN MN (CPB)
Abstract: Social media is rampant in our

current society. However, hospitals may
find the use of patient/family video conferencing technology challenging as there
is uncertainty about the privacy issues for
staff, patients and visitors. This paper will
explore this concept and provide examples
of the use of video conferencing technology and possible future implications.
Keywords: videoconferencing; guidelines; patients; education; technology
Childbirth is often seen as a very personal experience,

but with todays technology, personal may mean more than
just two people and their care team. In todays culture, access
to the internet, smart phones and video-recording may mean
that families want to incorporate this personal connection into their birthing experience. This may be even more
important when delivery is anticipated to result in a baby
who may not survive a long life. Legacy building during the
pregnancy, delivery and post-partum period becomes even
more important when death is imminent (Ives-Baine, 2010;
Storres, 2010).
As clinicians involved with these families, we need to
be proactive to encourage and support opportunities for
families to tell their story (McDonald, 2002; Schweibert &
Kirk, 2002), especially when the extended family and friends
are not in the same country as the birthing parents. The intent of this article is to share reflections of families who have
used online social media to involve their extended families
overseas and at home in the experience of saying goodbye to
their dying babies. We will also provide recommendations
for system support.
In our Palliative Care and Bereavement Program,

when we have known that babies are dying, we have taken
many opportunities to help families to connect both with
their baby and their extended family. This has involved the
opportunity for photos, video of special events, prints of
hands and feet, among other things (Ives-Baine, 2010; Storrs,
2010). During several of these legacy creation opportunities,
families have approached us to ask if they could use technology to connect online with their extended family to help
them say goodbye to their child. This was accomplished with
support from our hospital administration, and was perceived
by the family across the world and by the parents to be a
very helpful experience for all. In a recent conversation with
one of the fathers (with informed consent), he identified that
his own mother talked often of meeting her grandson, and
being able to talk to him, even though she was not physically
there. Another family valued the opportunity for ritual with
their extended family when their son died, as this would
have been done had the family been together. Recently, a
family used their IPad to connect with family across the
country, to involve them in meeting their grandchild and to
allow them to participate in the baptism of this tiny baby.
The grandparents were able to speak to and connect with the
baby in a very powerful way.
While this was specifically undertaken in the Newborn
Intensive Care Unit environment, the concepts identified
should be readily transferrable to the obstetrical realm. We
should encourage women and their families experiencing
anticipated stillbirth, delivery of a baby who is extremely
premature, or has known congenital anomalies where a
palliative/perinatal hospice approach is being considered, to
take advantage of these opportunities as a part of normal
birth planning.

Many peoples response to video conferencing technology is to deny its usage, as has been done with cell phones for
many years. This type of ban on technology is not sustainable as it cannot be enforced. Enforcement of bans results
in patients using these technologies without our knowledge
and generates distrust and dishonesty in the patient- caregiver relationship. Our program has experienced situations
with visitors using cell phones at the bedside, despite clear
signage throughout the unit prohibiting their use, as there
remains concern in the intensive care environment that radio
frequencies may interfere with our equipment.
It is far better, as healthcare providers, to think about
how we can use this technology safely to improve the care
and support of families. We should think about where its use
is appropriate and encourage it. We will need to think where
and how it is to be used and what guidelines are needed to
protect staff, patients and visitors within our institutions.
Technology is at the point where any hospital with patient
Wi-Fi access cannot avoid considering these issues (Brewin,
2010). Hospital patient Wi-Fi will not even be required
in the near future, as more mobile networks roll out 4G
services.
As educators and clinicians within our hospitals, it
will be necessary to guide the development of policies and
educate staff who may be initially fearful about the potential benefits and pitfalls of online video teleconferencing. In
developing guidelines we will need to think about how to
protect staff s privacy, manage potential risks and maintain
patient privacy. We will have to consider the privacy within
our patient rooms, in shared environments or areas where
staff may be discussing other patients. Because of these
considerations, it may be necessary to limit or block audio
transmission with the images. We will also have to consider
the privacy and safety of our staff, who may unwittingly walk
into an environment where video transmission is being used.
Staff should advocate for the use of signs to protect everyones privacy. In our experience, we have moved the patients
to a private room to reduce the impact on other families and
to provide privacy for parents and staff alike. This was appreciated by the family, as it was quieter for communication,
and was valued by the health care providers as they were not
accidentally walking into a difficult situation.
helping families come together at the

death of their child, we have seen the joy
and support that technology can bring to
the parents as well as those far away.
Some hospitals have answered this call for on-line access
by employing companies to provide this technology. However, with the continued march of technology to miniaturize
and become cheaper, this is not likely to be necessary. We
have found a number of secure internet based Wi-Fi video
baby monitors that would serve this purpose, as well as
inexpensive and small computers and smart phone devices
that would do the same job. This will require staff with the
necessary skills to maintain the equipment and security of
the system.
Whatever system is used, a detailed description of the
level of security written in a patient- friendly way will need
to be provided. Verbal or written consent will need to be obtained from the families. A legal statement of limited liability
on the hospitals part may also need to be developed. Alternatively, hospitals may prefer to make guidelines for patients
using their own equipment, but this is open to abuse and
may be harder to control. In our experience we have asked
the parents to use their own equipment to avoid accidentally
linking into hospital systems and this would also limit the
hospitals responsibility for the technology working properly.
The families we have worked with used MSN Messenger and
Skype as their communication tools.
In our own experiences helping families come together
at the death of their child, we have seen the joy and support
that technology can bring to the parents as well as those far
away. The following comments are from interviews conducted with families about their experience, after time for
reflection:
It was wonderful. Although they had seen quite a few
pictures of him, the video conferencing bought the pictures
to life. They were able to see him move his arms and legs
and even open his eyes.
It was an extremely emotional moment for all of us, but
being on the other side of the screen helped them become
a part of the process and stay close to us during his last
breaths and after his death. We were able to talk about
the experience later, as we were all there together.

In the neonatal world, there have been many examples
of this technology being used for remote visiting (ACT
Health, 2010; Bronovo Nebo Foundation, 2010; ONeill-Hill,
2011; University of Arkansas, 2006). In the early studies on
this topic, many people had initially been worried that it
would reduce actual visiting to the unit. However, in a small
study, the opposite appeared to be true (Gray et al, 2000). In
our own institution, we are developing policies and programs
for remote family visiting. We anticipate this to be a videoonly opportunity, but know the value of seeing the baby
on families and its influence on bonding (Gray et al, 2000).
We are not yet at the implementation phase of this potentially unit-wide opportunity to enable connections between
parents and their babies. We encourage other hospitals to
think about this now and embrace the rapid advance of
technology, using it to improve the experience of caregivers, patients and parents. Resistance is futile. We need to
advance alongside our technology-savvy patients and families
and create a safe and supportive environment for optimal
experiences utilizing technology.
References
ACT Health (2010, November 26). New Webcam Service- first of its kind
in Australia. Health Territory- a Newsletter for Healthcare Providers. Autumn.
Retrieved from http://www.health.act.gov.au/c/health?a=sendfile&ft=p&fid
=1285118035&sid= , Canberra, AUS.
Brewin, B. (2010, June 24). VA plans to provide wireless Internet access
to patients in hospitals. NextGov Newsletter. Retrieved from http://www.
nextgov.com/nextgov/ng_20100624_8994.php
Gray, J., Safran, C., Davis, R.B., Pompilio-Weitzner,G., Stewart, J. E. Zaccagnini , L., & Pursley, D. (2000). Baby CareLink: Using the Internet and
Telemedicine to Improve Care for High-Risk Infants. Pediatrics, 106(6),
1318-1324.
Ives-Baine, L. (2010). Creating a legacy: do items that support family
memories reall y make a difference? CHIPPS Newsletter, Issue 20. pp. 4-9
Retrieved from http://www.nhpco.org/files/public/ChiPPS/ChiPPS_newsletter_20_August_2010.pdf
McDonald, H., & Committee on Fetus and Newborn, (2002). American
Academy of Pediatrics. Clinical report: Perinatal care at the threshold of
viability. Pediatrics, 110, 10241027.
ONeill-Hill, L. (2011, December 12) Parents keep watch on newborns
with hospital webcams. CNN Health. Retrieved from http://www.cnn.
com/2011/12/12/health/webcams-nicu-hospital-infants/index.html
Schwiebert, P., & Kirk, P. (2002). When hello means goodbye. Portland,
Oregon: Perinatal Loss.
Storres, T. (2010). Now I Lay Me Down to Sleep. CHIPPS Newsletter, 20,
27-29. Retrieved from http://www.nhpco.org/files/public/ChiPPS/ChiPPS_
newsletter_20_August_2010.pdf
University of Arkansas, Angels Report. (2006). Babies in intensive care gain
Guardian ANGEL eye. The Angels Report. Spring Retrieved from http://www.
uams.edu/ANGELS/newsletters/Angels%20Spring_06.pdf
Dr. James Edward Pugh is currently a fellow in the Neonatal/

Perinatal Programme at the Hospital for Sick Children in
Toronto. His research interests include medical informatics, focusing on the area of computer assisted decision support and early
warning systems. Dr. Pugh will be pursuing his Masters Degree in
Medical Informatics in 2012.
Lori Ives-Baine has been a nurse at The Hospital for Sick Children in Toronto for 22 years, all of them in the NICU. Her work
in perinatal palliative and bereavement care and support has
been ongoing for the past 18 years.
Bronovo Nebo Foundation. (2010, March 29). Bronovo offers parents to

watch baby 24 hours per day via a webcam. Retrieved from http://www.
bronovo.nl/Bronovo/en-GB/bronovo/about_bronovo/news/news6.htm
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Helping Families
Create Keepsakes
When a Baby Dies
by Rose Carlson, BS
Abstract: This article examines the importance of childbirth educators helping families who experience the death
of a baby create tangible mementos. It
explains how and why memory making activities help not only parents but
also siblings and grandparents grieve in
healthy ways, enabling the deceased baby
to be integrated into the fabric of their
lives. Suggestions are provided that go
beyond photographs and hand/footprints
that bereaved parents are typically given,
as well as ways to creatively use the hopes
and dreams parents have for their baby
to provide unique keepsakes. Finally,
this article shares tips that will empower
nurses and other professionals to present
choices in ways that encourage bereaved
families to make the most of the brief
time they have to spend with their babies,
and offers ideas and suggestions for ways
parents who were not given memory making opportunities at the hospital to create
mementos in future years.
Keywords: Keepsakes, Photographs, Hope, Remembering, Choices
Introduction
When a family is expecting a baby, the last thing parents imagine is that the baby will die. Approximately 15%
of pregnancies end in miscarriage, and 1% end in stillbirth
according to the National Center for Health Statistics, 2007
(Gold, Boggs, & Mugisha, 2011). The babys death is a shock
to the family, and rather than celebrating a new life, parents
are left feeling heartbroken and yearning for ways to say a
meaningful goodbye to their baby.
When parents are told their baby has died, the time
they have to make decisions is brief. If not gently presented
with options, they may ultimately make decisions they later
regret. It can be challenging for parents to impart meaning to
their babys life when the loss is during pregnancy or during
the newborn period. Society has a common view that the
death of a baby is less significant than that of an older child
(Bennett, Litz, Sarnoff, & Maguen, 2005).
This article provides an overview of ways to assist
parents in creating important tangible mementos. The
importance of involving siblings and grandparents in the care
of the deceased baby is presented. Suggestions for creating
mementos in the hospital setting are provided as well as
suggestions for ways families can continue to create ongoing
meaningful keepsakes.
Literature Review
It can be challenging and stressful for nurses and other
professional caregivers to provide memory making opportunities for families experiencing the death of a baby if they
are unsure of how to discuss options with parents. The time
shared is brief, the impact is tremendous (Chan, Lou, Arthur,
Cao, Wu, Li, Sagara-Rosemeyer, Chung, & Lui, 2008). The
memories created need to sustain parents for a lifetime. Siscontinued on next page

ter Jane Marie Lamb, a pioneer in the field of perinatal loss
support and the founder of Share Pregnancy and Infant Loss
Support, Inc., believed it is imperative for grieving parents to
be given the opportunity to make memories with their baby.
She addressed this importance in Rights of Parents When a
Baby Dies (Lamb, 1992; McCurdy & Byrne, 1992).
Over the past 35 years, these rights have become
standard practice, and parents typically see, hold, care for,
and photograph their baby. However, these procedures have
been scrutinized and became the center of controversy after
a study in the United Kingdom determined that seeing and
holding a deceased baby had negative consequences, such
as anxiety in the next pregnancy (Hutti, 2005; Limbo &
Kobler, 2010). Other studies show that it is important to give
bereaved parents time to be with their deceased baby (Limbo
& Kobler, 2010), that most bereaved parents feel the time
they spend with their baby is too short (Hutti, 2005), and
that photographs and other keepsakes are considered helpful. The professional organization Pregnancy Loss and Infant
Death Alliance (PLIDA), whose mission is to provide support
to healthcare practitioners and parent advocates in order to
improve the care parents receive while grieving the death of
a baby, agrees. In 2011, PLIDA, with international collaboration, published a research-backed position statement affirming that bereaved parents close contact with their baby helps
them acquire positive memories of their babys life (Warland
& Davis, 2011).
Importance of Tangible Mementos

When an older child dies, parents have a myriad of
tangible items and photographs to find comfort in and remember their child by that parents experiencing the death of
a baby do not have. Bereaved parents feel a strong sense of
connection to objects and the process of creating them provides a meaningful way for them to care for and bond with
their baby (Davis, 1996; Heustis & Jenkins, 2005; Lukas,
2001; Warland & Davis, 2011). Parents birthing a live baby
are expected to want to bathe the baby, take handprints,
footprints, photographs, and create lasting keepsakes. When
the baby has died, it may not be clear what the parents want,
and unless they knew ahead of time their baby would not
survive, they are unprepared, overwhelmed, and they rely
on their nurses expertise to guide them (Heustis & Jenkins,
2005).
When a baby dies, the mom is given very few choices

as to medical procedures, and she may feel as if she has no
control over her body. In essence, being given the opportunity to perform loving tasks is a way for the family to be in
control of some aspects of what has happened (Leon, 2008).
Memory making helps the family weave the baby into the
fabric of their lives and continue parenting the baby (Heustis
& Jenkins, 2005; Limbo & Kobler, 2010). Not being offered
the opportunity can have a detrimental effect and interfere with grieving (Leon, 2008). Limbo and Kobler (2010)
reported that mothers who do not spend as much time with
their baby as they want to experience a seven-time greater
risk of developing depression.
Memory making helps the family weave

the baby into the fabric of their lives
and continue parenting the baby
Memory Making in a Hospital Setting
Fortunately, bereaved parents today have many more
opportunities to have their needs met and generally are
treated more compassionately than they were prior to the
beginning of the perinatal loss movement in the late 1970s.
Today, many families will find ways in the months and years
after their babys death to incorporate him or her into the
life of the family, however, the window of opportunity for
creating some remembrances is limited. Giving parents the
opportunity to nurture their baby at birth in the same way
parents of living children do is important (Davis, 1996).
Today, many professional caregivers are adept at treating
parents and their babies with the respect they deserve, and
they understand the importance of keepsakes, but some are
uncomfortable approaching parents to ask their thoughts
on photographs and other mementos. Todd Hochberg, a
professional photographer who specializes in documentarytype photo story-telling for grieving parents, explains in his
article, Moments heldphotographing perinatal loss (2011),why
photographs are so important to families:
photography holds a position of great importance and
influence. In our personal lives, we use it to record both
momentous and mundane moments. Photographs, as
storytellers, build and pass on our family histories and
legacies. When a baby dies, the natural order of this

history and legacy is upset by an awful disruption of life
assumptions. Whether their baby dies early or late in pregnancy or shortly after birth, parents have strong emotional
ties to their baby through many months of pregnancy or
even through long-held hopes and dreams, but have few
tangible mementos that would affirm this childs existence
and significance after the death (p. 1311)
While nurses were once the primary photographer, and
in many hospitals still are, there are now not-for-profit organizations such as Now I Lay Me Down to Sleep (NILMDTS),
an international network of professional photographers who
offer free services to take photographs either before or after
death. Other organizations of photographers who work with
grieving parents have begun to form in local areas. Contact
professional photographer organizations in your area to find
out if any local photographers offer this service.
The options for creating other keepsakes are endless.
Traditionally, many parents are given a memory box containing items such as a name card, hospital bracelet, lock of
hair, handprints/footprints and items that were used when
caring for the baby. However, spending time with the parents
exploring what the baby meant to themwhat hopes and
dreams they had for their child as he or she grew upcan be
a gift. Perhaps they dreamt of taking their little boy to baseball games, and instead of only placing the babys handprints
on a card or other paper, place them on a baseball, creating
a one-of-a-kind keepsake. Make 3D hand and foot molds
or create handprints in plaster or air dry clay. Purchase clear
glass holiday ornaments and place the babys handprints on
an ornament using acrylic craft paint. Parents can then place
cut-up strips from a birth announcement, dried flower petals, or bits of ribbon inside to personalize it. Some caregivers
help the mom paint her baby girls fingernails and toenails,
creating a unique bonding experience. Let parents guide
and inspire you as you use your imagination. Keep a rolling
cart or other container that can be brought into the room
stocked with supplies such as colored ink pads, air dry clay
(for making hand and foot impressions), markers, paint pens,
paper, fillable glass ornaments, and other items regularly
used in memory making.
Involving Siblings in Memory Making

Siblings have been referred to as the forgotten mourners (Callister, 2006; OLeary & Gaziano, 2011). The loss of
a sibling can have a profound impact on children, who often
go through the same intense feelings of grief as their parents
(Neimeyer, Harris, Winokuer & Thornton, 2011). These children may have been looking forward to being a big brother
or sister and are devastated when the baby dies. While most
research in the perinatal bereavement field focuses on grieving parents (Roose and Blanford, 2011), some researchers
have evaluated the benefit of support being given to grieving
siblings (Avelin, Erlandsson, Hildingsson & Rdestad, 2011;
OLeary & Gaziano, 2011; Packman, Horsley, Davies &
Kramer, 2007).
Jeannie Nicholson
Overwhelmed parents may question whether or not they

should involve children in rituals and photographs, or if they
should allow the children to see and/or hold the deceased
baby. They may want to keep them innocent regarding
death (Roose & Blanford, 2011). Parents may feel their children are too young to understand, and professional caregivers
play an instrumental role; compassionate guidance can affect
the parents decision as to whether or not to include the
children. Additionally, professionals can advise parents that
children who are not included in goodbye rituals may end up
feeling more confused about what has happened and thus not
receive the support that is needed to enable them deal with
their feelings and emotions (Roose & Blanford, 2011).
There are numerous ways children can be involved in
bonding and memory making. Depending on their ages
and desires, children can participate in the same rituals and
memory making activities as the parents. Consider making
a handprint of an older child and then placing the babys
handprint on top of that in a different color. This can be

done even in situations where parents decide to not let their
children see the baby. Even if children do not participate,
parents can share photographs, handprints and plaster molds
of the babys hands and feet, making the baby more real
to the children (Limbo & Kobler, 2010; Roose & Blanford,
2011). If children are too young to understand what happened, parents can share mementos in later years. Researchers in a 2010 study conducted by Erlandsson, Avelin, Sflund, Wredling and Rdestad found that it can be beneficial
for children to participate in the funeral or memorial service
and parents felt it was a positive experience for both the
siblings and parents. Additionally, it can be comforting and
empowering for children to attend other ceremonies such as
walks and holiday services (Roose & Blanford, 2011). Having
a group of children sing a song at a memorial event can be
an extra-special touch. It is not unusual for adults, who as
children experienced the death of a baby sibling, to indicate
the positive impact that being allowed to interact with their
sibling who died had on their lives (Limbo& Kobler, 2010).
If parents choose not to have their children participate
in memory making activities at the hospital, it is still possible for them to create their own mementos to remember
their baby brother or sister by. Most children enjoy drawing,
painting, writing and other creative processes and often,
their emotions will surface as they create, giving parents an
opportunity to discuss what their children are thinking and
feeling (Avelin, et al., 2011; Erlandsson, et al., 2010; Packman, Horsley, Davies, & Kramer, 2007). Depending on their
ages, children can help design a birth announcement, make
holiday ornaments to give to family and friends, write a
poem to be read at the funeral, decorate a journal to write
letters and/or poems to the baby, and create their own scrapbook with pictures, handprints/footprints and other memorabilia. Children can design a painting or other artwork to
decorate the babys casket; the artwork can then be made
into thank you cards. Children often find it soothing to wear
a special piece of jewelry, either purchased or one they make.
Finally, children can be encouraged to decorate their own
memory box.
Memory Making for Bereaved Grandparents

Many times, the birth of a baby is a family celebration
involving grandparents and extended family and friends.
When a baby dies, the grandparents can be a source of emo-
tional support (OLeary, Warland & Parker, 2011). While

parents make the final decision on who takes part in farewell
rituals, involving grandparents can be valuable to the entire
family (Roose & Blanford, 2011). If parents agree, offer the
same types of memory making opportunities to grandparents
that are offered to the parents. OLeary et al. (2011) found
that bereaved parents typically find comfort in watching the
babys grandparents hold and care for the baby, attend the
funeral, and display photographs in their homes. In addition, involving the grandparents in memory making can
help them understand that this type of loss is handled much
differently than it was many years ago, which can encourage
them to learn effective ways to communicate with the babys
parents (Roose & Blanford, 2011). When parents are open
to it, grandparents appreciate being offered memory making
opportunities, and they often find ways to give back by making baby clothes and blankets and/or grandparents quilts or
Afghans to donate to bereavement programs.
Ongoing Memory Making

While bereaved parents are provided with many more
choices than they once were, there are still times when
parents are not offered such opportunities. Even when they
are given every option to create keepsakes, they often search
for ways to continue weaving the baby into the fabric of their
familys life. This is especially significant to those whose loss
occurred early in the pregnancy when it is difficult to gather
tangible remembrances. Help parents begin by assembling
reminders of the pregnancy photographs of the mother
while pregnant, ultrasound images, cards, appointment cards
from the doctor, hospital bracelets, hats, locks of hair and
other items which can be placed in an album, memory
box, or shadow box. There are organizations that make teddy
bears, quilts and other stuffed animals using clothing and
other fabrics. Keepsakes can be created using dried flowers;
petals can be placed into clear glass ornaments or dried,
pressed and glued onto pillar candles, glass candle holders
and cards. There are companies that create beads, jewelry
and rosaries from dried rose petals and even ashes. (See table
1 for a list of online resources for commemorative items).
Parents frequently find comfort in rituals

and traditions carried out each year
Sharing ideas with parents for ways they can creatively
display and keep their babys memorabilia can be comfortcontinued on next page

ing. Displaying items in a shadow box or scrapbook that
incorporates memorabilia and photographs can be helpful.
Parents may find working on a scrapbook cathartic, and it
can be added to on birthdays and other special occasions.
Some parents choose one day each year, such as the babys
birthday or a holiday, to write a letter in a journal. This can
involve the entire family as children may find this a pleasurable activity, too.
For parents who find it calming to connect with nature,
a memory garden may be an ideal project for the entire
family. Planning, preparing and caring for a garden can be
therapeutic and provide a physical way for parents to feel
connected to their baby (Carlson & Nichols, 2011). A garden
will become a living tribute to the baby for many years and
may be especially meaningful for parents who do not have
a cemetery or other special place to visit. Gardens can be
personalized with statuary, wind chimes, stepping stones,
fountains, benches and other ornaments. (See table 1 for
online sources to purchase engraved outdoor items). Families
can take photographs of the garden each year at the same
time or during different seasons and place them in a special
album or scrapbook.
In addition to the ideas below, parents frequently find

comfort in rituals and traditions carried out each year. Many
support groups and hospitals offer memorial events such as
walks, garden dedications and holiday services. Invitations
and programs from these events can be collected into an album or treasure box, creating a cherished keepsake that can
be added to for many years. Consider holding an event night
once or twice a year to scrapbook, make a beaded bracelet,
decorate candle holders, or make garden stepping stones.
Even years after their loss, parents appreciate and enjoy the
camaraderie of working on a project with other bereaved
parents as well as using their hands to create something
beautiful that commemorates their babys life.
Summary
This article provides an overview of the importance of
assisting bereaved parents in the creation of tangible mementos and photographs. While grieving parents have many
options to create keepsakes at the time of the loss, there are
occasionally situations where parents are not given this opportunity. Childbirth educators and other nurses can play a
pivotal role in assisting bereaved parents in memory making
and by suggesting ways they can continue incorporating their
baby into their familys story in tangible ways.
Table 1. Online Sources for Engraved Outdoor Items

Art from Ashes
http://www.artfromashes.com/
Beads and pendants made from ashes
Crafte Family
http://www.craftefamily.com/
Wooden engraved baby blocks and other keepsakes
Heaven Born
http://heavenborn.com/
Handmade pillows to provide a tangible source of comfort
Memorials
http://www.memorials.com/
Engraved rock and other outdoor memorial items
My Forever Child
http://www.myforeverchild.com/
Engraved and beaded remembrance jewelry
Nelle and Lizzy
http://www.nelleandlizzy.com/
Personalized jewlery
Now I Lay Me Down to Sleep http://www.nowilaymedowntosleep.org/
Professional bereavement photography
Oh So Cheeky Boutique
http://www.ohsocheekyboutique.com/
Storybook keepsake baby blankets
Portraits by Dana
http://portraitsbydana.com/
Pencils sketches from photographs
Remember me Bear
http://www.remembermebear.com/
Teddy bears made from clothing and other fabric items
Rock It Creations
http://www.rockitcreations.com/
Engraved garden stones
Rose 2 Remember
http://www.roses2remember.com/
Memorial jewelry and beads made from dried rose petals
Sue Ella Signatures

http://www.sueellasignatures.com.au/index.php/ Keepsake jewelry

http://www.sueellasignatures.com.au/index.php/memorial-jewellery
memorial-jewellery
Thumbies
http://www.memorials.com/print-keepsakes.php

Keepsake jewelry engraved with handprints, footprints,

or fingerprints
Touching Souls Photography http://www.toddhochberg.com/main.html
Professional bereavement photography by Todd Hochberg

Lukas, M. (2001). Linking objects and parental bereavement following

pregnancy and infant loss, part 1. Caring Notes, 7(1), 1-2, 4.
Lukas, M. (2001). Linking objects and parental bereavement following
pregnancy and infant loss, part 2. Caring Notes, 7(2), 1-2, 4.
References
Avelin, P., Erlandsson, K., Hildingsson, I., & Rdestad, I. (2011). Swedish
parents experiences of parenthood and the need for support to siblings
when a baby is stillborn. Birth Issues in Prenatal Care, 38(2), 150-158.
Bennett, S. M., Litz, B. T., Sarnoff, L. B., & Maguen, S. (2005). The scope
and impact of perinatal loss: Current status and future directions. Professional Psychology: Research & Practice, 36(2), 180-187.
Callister, L. C., (2006). Perinatal loss: A family perspective. Journal of Perinatal and Neonatal Nursing, 20(3), 227-234.
Carlson, R., et al. (2011). Bittersweethellogoodbye: A resource in planning
farewell rituals when a baby dies. St. Charles, MO: Share Pregnancy and
Infant Loss Support, Inc.
Chan, et al., (2008). Working with families: Investigating factors associate
to nurses attitudes towards perinatal bereavement care. Journal of Clinical
Nursing, 17, 509-518. doi: 10.1111/j.1365-2702.2007.02007.x
Davis, D. L. (1996). Affirming your baby. In Empty cradle, broken heart: Surviving the death of your baby (pp. 48-65). Golden, CO: Fulcrum Publishing.
Erlandsson, K., Avelin, P., Sflund, K., Wredling, R., & Rdestad, I. (2010).
Siblings farewell to a stillborn sister or brother and parents support to their
older children: A questionnaire study from the parents perspective. Journal
of Child Healthcare, 14(151). doi: 10.1177/1367493509355621.
Gold, K., Boggs, M., & Mugisha, E. (2011). After pregnancy loss: Internet
forums help women understand they are not alone. Womens Health Issues,
doi: 10.10106/j.whi.2011.07.06.
Hochberg, T. (2011). Moments heldphotographing perinatal loss. The
Lancet, 377(9774), 1310-1311.
Huestis, J. & Jenkins, M. (2005). Memories: Making the moment last a
lifetime. In Companioning at the time of perinatal loss: A guide for nurses,
physicians, social workers, chaplains and other bedside caregivers (pp. 81-97). Ft.
Collins, CO: Companion Press.
Hutti, M. H., (2005). Social and professional support needs of families after
perinatal loss. JOGNN, 34(5), 630-638. doi: 10.1177/0884217505279998.
Lamb, J. M. (1992). Parents needs and rights when a baby dies. Health
Progress, 73(1), 52-57.
Leon, I. G. (2008). Helping families cope with perinatal loss. The Global
Library of Womens Medicine, doi: 10.3843/GLOWMN.10418.
Limbo, R., & Kobler, K. (2010). The tie that binds: Relationships in perinatal
bereavement. Bereavement, 35(6), 316-321.
McCurdy, D. B., & Byrne, T. (1992) The rights of parents when a baby dies.
The CareGiver Journal, 9(2/3), 22-36.
Neimeyer, R. A., Harris, D. L., Winokuer, H. R., & Thornton, G. F. (2011).
Bereavement in children and adults following the death of a sibling. In Grief
and bereavement in contemporary society: Bridging research and practice (pp.
107-116). New York, NY: Routledge.
OLeary, J. M., & Gaziano, C. (2011). Sibling grief after perinatal loss. Journal of Prenatal and Perinatal Psychology and Health, 25(3), 173-193.
OLeary, J., Warland, J., & Parker, L. (2011). Bereaved parents perception of
the grandparents reaction to perinatal loss and the pregnancy that follows.
Journal of Family Nursing, 17(3), 330-356. doi: 10.1177/1074840711414908.
Packman, W., Horsley, H., Davies, B., & Kramer, R. (2007). Sibling
bereavement and continuing bonds. Death Studies, 30, 817-841. doi:
10.1080/07481180600886603.
Pregnancy Loss and Infant Death Alliance (PLIDA). (2008). Bereaved parents holding their baby. Retrieved March 11, 2012, from http://www.plida.
org/position-statements
Pregnancy Loss and Infant Death Alliance (PLIDA). (2008) Offering the
baby to bereaved parents. Retrieved March 11, 2012, http://www.plida.org/
practice-guidlines
Roose, R., & Blanford, C. (2011). Perinatal grief and support spans the
generations: Parents and grandparents evaluations of an intergenerational
perinatal bereavement program. Journal of Perinatal and Neonatal Nursing,
25(1), 77-85. doi: 10.1097/JPN.0b013e318208cb74.
Rose Carlson, Program Director at the national office of Share

Pregnancy and Infant Loss Support, Inc., is a bereaved parent
who has experienced four pregnancy losses and has 10 years
of experience supporting families who have suffered the tragic
death of a baby. She teaches workshops that educate nurses,
social workers, chaplains and support group leaders as to the
ways to best care for parents and families grieving the death of a
baby. She also edits the Sharing newsletter and has written many
of the pamphlets, booklets and other resources Share provides
bereaved families.
Incorporating Prenatal Yoga

into Childbirth Education Classes
by Molly Remer, MSW ICCE ICPFE
Keywords: Prenatal yoga, active birth, childbirth education, birth

classes, birth preparation
The essence of yoga can be distilled into four key elements: breath, feeling, listening to the body, and letting
go of judgment and expectation (YogaFit, 2010). When
considering the essence of yoga, it is easy to see what a
natural complement it is to conscious, active preparation
for a healthy birth. Most birth educators would agree that
paying attention to her breath and to her feelings, listening
to her body, and letting go of preconceived expectations of
what birth will be like are perhaps the most crucial messages
to convey to the pregnant woman and her partner. Additionally, experts widely agree that exercise during pregnancy has
beneficial effects for the cardiovascular and musculoskeletal
systems and is associated with physical and psychological
well-being. There is also some evidence that recreational
exercise may reduce the incidence of premature labor and
low birthweight babies (Hyatt & Cram, 2003).
Anyone involved with educating adult learners (in any
context) is likely to be familiar with the concept that people
are most likely to retain information that they have actually
practiced (versus reading about, hearing about or seeing
demonstrated). I have found that incorporating a few simple
yoga poses into each class session is a beautiful way of illustrating and applying many important elements of childbirth
preparation. In apSuggested Resources for

proximately 10 minBirth Educators
utes of movement,
The Prenatal Yoga Deck: 50 Poses
and Meditations, Olivia H. Miller,
important points
Chronicle Books, (2003)
can be underscored
YogaFit: PreNatal DVD, YogaFit (2009)
without having to acYoga for Your Pregnancy DVD (2004)
tually say anything or
All available via www.Amazon.com
lecture to clients.
The hope is that as we move together through a carefully
chosen series of poses, subtle emotional development and
trust in birth occursagain, in a more effective manner than
by the childbirth educator saying during class: Trust birth!
One rationale for incorporating yoga into prenatal
classes is as follows: First, people often learn and retain information more effectively by actually doing something. Practicing the yoga poses together allows experiential practice of
Molly Remer
Abstract: Birth is an intensely embodied

experience. Prenatal yoga provides an
ideal means to incorporate body-based
lessons and inner awareness into childbirth education classes. Prenatal yoga
and birth education do not need to be
offered as separate classes, but can be
incorporated together for a holistic approach to preparing for birth.
Molly Remer
pelvic floor exercises, pelvic rocks, tailor-sitting, leg cramp

alleviation, and back pain coping techniques, to name a few,
instead of just hearing me talking!
Second, and most important, Yoga in prenatal classes
emphasizes that birth happens in the body. As childbirth
educators we spend a significant amount of time talking and
sharing information, but birth does not only happen in the
mind. Birth happens most profoundly in the body. Not only
does birth happen in the womans body, but supporting and
being with a woman in labor is also an intensely physical
process, so it is important for partners to try the yoga series.
People today spend much of their time living in their
heads, and many of us do not feel comfortable with, or at
home in, our bodies. Practicing poses in class helps couples
out of their heads and into their bodies and begins a process
of feeling comfortable with moving and using their bodies
in positive ways. This may help them develop the trust and
confidence that will contribute to a smooth and peaceful
birth process.
Each pose is followed with a birth affirmation such as,

the magic and mystery of birth delight and amaze me
(Miller, 2003). Positive affirmations help plant positive seeds
of confidence and trust in the wisdom of womens bodies
and of the beauty of birth. These cognitive adjustments may
also send a welcoming message to the womans body and
baby as they both prepare for birth.
Opening classes with a series of poses is an effective
way to frame the class. Class can be opened with a brief
check-in period asking how people are feeling, about recent
prenatal appointments, and any questions can be addressed.
A transition from regular time into class time occurs with
a brief series of simple poses. This routine helps people transition from their normal days into feeling ready and excited
for birth class information.
Molly Remer
Each pose was chosen because it has specific birth- or

pregnancy-related benefits. Begin with healthy sitting
seated crossed legged or tailor-style on the floor with spine
straight. Do some neck rolls and shoulder rotations to
help release tension. Move into a brief series that includes
knee-rocking, leg stretches, Divine Mother Pose, Star Pose,
pelvic rock, standing squat, Palm Tree Pose, Half Moon Pose,
Triangle Pose and seated Mountain Pose. There is an additional short series of birthing room yoga poses described
with photographs that is available as a free handout on this
website (Talk Birth, 2011).
The series is closed with a very brief meditation or visualization exercise. The series of poses and the affirmations
are kept the same each week for retention purposes, but the
meditation is varied. A quick visualization or relaxation excontinued on next page

ercise (under two minutes) is often more effective and more
readily welcomed by couples than the longer visualization
exercises often used in classes (which can seem esoteric to
some people). A mindfulness meditation that is effective is:
Inhale and repeat silently: I exist in the here and now.
Exhale and repeat silently: The present moment is all I
have to be with
Continue inhaling and exhaling as you silently and simply
repeat: Here and nowpresent moment.
A favorite resource for easily and smoothly incorporating yoga into classes is The Prenatal Yoga Deck by Olivia
Miller, published by Chronicle Books in 2003. The poses
listed above were selected from this deck. The deck contains
50 cards, so the educator can easily build a series for use in
classes. Each pose card is accompanied by a lovely affirmation. The deck also includes six cards with simple meditations (the meditation above is adapted from one in the
deck). The deck format, tidy box for holding the cards and
sturdy card for each pose is an ideal format for transport to
class as well as serving to provide subtle reminder cards as
you lead couples through poses. Each card has a line drawing
on the back illustrating the pose, so assessing whether you
are doing the pose correctly is easy (sometimes just reading
a description of the pose is more complicated than seeing it
completed).
Occasionally the childbirth educator may get some eyerolling or weird, hippie exercise! responses from pregnant
couples. Regardless of how much or how little they appreciate the practice of yoga in classes, the poses used lay a
physical foundation for a positive attitude toward birth and
a sense of confidence as a birth-giving woman or supportive partner. Through the simple incorporation of yoga into
birth classes, the expectant couple receives an irreplaceable,
experiential grounding in the rhythm, focus, release, and
conscious awareness so essential to the intensely embodied
experience of birthing.
References
Hyatt, G.& Cram, C. (2003). Prenatal & postnatal exercise design. DSW
Fitness, Tuscon Arizona (training manual for the ICEA Certified Prenatal
Fitness Educator Program)
Miller, O. (2003). The prenatal yoga deck: 50 poses and meditations. Chronicle
Books, San Francisco, CA.
Remer, M. (2007). Incorporating prenatal yoga into childbirth education
classes. Midwifery Today, 4(84), 66.
Talk Birth. (2011). Retrieved from http://talkbirth.me/2010/03/10/birthingroom-yoga-handout/
Jeannie Nicholson
YogaFit PreNatal/Postpartum Specialty Program Manual. (2006). YogaFit

Training Systems Worldwide, Inc. Retrieved March 23, 2012, from http://
www.yogafit.com
Molly Remer, MSW, ICCE, ICPFE is a certified birth educator,

writer, and activist. She is a professor of Human Services, an LLL
Leader, editor of the Friends of Missouri Midwives newsletter, and
a doctoral student at Ocean Seminary College. She has two wonderful sons and an infant daughter and she blogs about birth,
motherhood, and womens issues at Talk Birth (http://talkbirth.
wordpress.com)
Book Review
A Gift of Time:
Continuing Your Pregnancy When Your

Babys Life is Expected to Be Brief
by Amy Kuebelbeck and Deborah L. Davis, PhD
reviewed by Jeanine M. Estrada, MBA
Amy Kuebelbeck and Dr. Deborah L. Davis have bravely
published a wonderful book that offers support and resources for families who have made or are making the decision to
continue a pregnancy when the childs life is expected to be
brief. A Gift of Time takes the reader through the emotional
journey of receiving the babys diagnosis, to making decisions
about continuing the pregnancy, through to welcoming and
saying goodbye to the baby.
A Gift of Time is written for and speaks to pregnant
families who have received a prenatal diagnosis indicating
that their baby will die before or shortly after birth, or for
couples that have already lost a baby during or shortly after
birth. While the book is not intended to tell the reader how
to feel and what to decide, it does aim at convincing parents
to choose life for their baby. Concepts of perinatal hospice
and palliative care are introduced. Knowledge of these new,
gentle ways of supporting parents and their babies can be
helpful for educators and caregivers.
Perhaps the best feature of
this book is its well-organized
chapters that allow someone to
pick up and start reading from
the pages that most closely
reflect the current mindset and
stage of the reader. Ten chapters focus on receiving the babys diagnosis, making decisions
about continuing a pregnancy,
grieving and adjusting to a new
path, settling in for the rest of
the pregnancy, choosing care for the baby, preparing for the
babys birth, life and death, welcoming baby, saying goodbye,
life after the babys death, and reflecting on the journey.
Parents who have chosen to continue their pregnancy
are quoted throughout the book, sharing their emotional
journey and buildPublisher/Location: The Johns Hopkins

ing a foundation of
University Press, Baltimore
support and hope
Year: 2011
in a time of loss,
Number of Pages: 391
confusion, and grief.
Cost: $18.95 List Price, Kindle: $9.99,
The reader follows
Nook: $10.42
these couples as
they tell their stories
from diagnosis to saying goodbye and is the foundation of
the book. In addition to these quotes, the authors reflect on
realistic expectations for the families. They provide resources
for more information and advise parents on how to find support in other places. For childbirth educators, A Gift of Time
includes a particularly helpful appendix with a sample birth
plan that can be valuable when working with parents who
will face a loss. It addresses points of consideration that you
would not normally include in a birth plan, which can serve
as a guide when working with a couple expecting the loss of
a baby after birth.
While I would not recommend this book to parents
who have already terminated a pregnancy that would have
ended in a very short life for the baby, it is a great asset for
couples who have not yet made a decision or who have
already decided on a path forward. For childbirth educators, this is an important read that will introduce you to new
options of perinatal hospice and palliative care, and help you
serve as another source of support for families that face this
type of birth and loss.
Jeanine is an ICEA Member who is currently enrolled in the

Childbirth Educator Certificate Program. She also serves on the
ICEA Board of Directors as Chair of the Communications Committee and is an advocate for natural, gentle childbirth. Jeanines
email is jeanine@icea.org.
Book Review
The Five Ways We Grieve:
Finding Your Personal Path to Healing

After the Loss of a Loved One
by Susan A. Berger, LICSW, EdD
US $17.95 CAN $20.50

Paperback
ISBN: 978-1-59030-899-8
Trumpeter, an imprint of
Shambhala Publications, Inc.
256 pages
reviewed byy Molly Remer, MSW, ICCE, CPFE

most people are unaware that our losses affect us forever, since they cause us to see the world and ourselves differently.
The task of discovering Who am I now? and finding our own
path to healing represents one of the greatest challenges of the
grieving process. Susan Berger
As a mother in the process of grieving miscarriage, I was
instantly intrigued by the book The Five Ways we Grieve, by
Susan Berger. While it is not specifically about pregnancy
loss, I felt it might still have helpful information to contribute to mothers who are coping with pregnancy loss. It does
not disappoint! The book describes the five identities survivors of loss assume and the ways in which these identities
transform or paralyze. While the experience of pregnancy
loss is often minimized or marginalized culturally as less significant than other types of loss, the reality is many women
experience profound and genuine grief as real as any other
grief and loss. When I found out my son had died after 14
weeks of pregnancy, I experienced a depth of sadness never
previously experienced. I felt a profound sorrow. I felt certain
it was the same depth and type of grief I would experience at
the death of any of my dearly loved children.
Regardless of the size of person who died, many people
experiencing grief will readily recognize themselves in the
descriptions of the five identities explored in The Five Ways
We Grieve. Most people are familiar with the classic 5 Stages
of Grief model developed by Elisabeth Kubler-Ross (Denial,
Anger, Bargaining, Depression, Acceptance), however, these
stages most readily apply to people who are dying, not to
the survivors. While survivors still speak of moving through
these stages, they are not really adequate to describe the experience of grieving a loved one. The five identities explored
in Susan Bergers book are:
Nomads: Those who have not yet resolved their grief in a way
that allows them to move on with their life and form a satisfying
new identity.
Memorialists: Their main goal is to honor their loved one by
creating physical objects or rituals that honor the deceased.
Normalizers: They work to recreate the kind of life they lost or
wished theyd had.
Activists: They focus on helping other people who are dealing with
the same disease or issues that caused their loved ones death.
Seekers: They experience loss as a catalyst for philosophical
exploration into the meaning of life.
Bergers thoughtful and thorough exploration of the

grief identities dramatically broadens the scope of our
understanding of the process

and path of grief. Presenting
information in terms of identity reminds the reader that
the experiences of loss and grief become a part of you, rather
than something to overcome or get past. The Five Ways We
Grieve is a sensitive, comprehensive, and enriching exploration of the multifaceted and profound nature of grief and the
book will be of value to childbirth educators, doulas, parents
and anyone who has experienced personal loss.
Personal Experiences with Pregnancy Loss and the
Five Grief Identities
Having experienced two miscarriages myself, one a second trimester loss and the second an early loss, in my own
experience, I believe the Activist and Memorialist roles are
intimately intertwined. Nearly immediately post-loss, I wanted to reach out to others and to try to help them as they
experienced their own loss journeys. Creating my website/
blog/journal, Footprints on My Heart, was a means of helping
myself through exploration of my feelings and thoughts, but
also a means of helping others. This is also a means of being
a memorialist. I wanted to assure that Noahs brief life would
be remembered and would have value. On significant dates,
I felt/feel an urge to acknowledge the date with some type of
memorialization. And, no matter how distant the experience
becomes I will never forget. And, I dont want to. My babys
death/birth and my experiences with those things are part of
me in a permanent way. The experiences now come through
the lens of a memory and commemoration/memorialization,
rather than as a fresh or current, in-process experience. I
write to ensure he is not forgotten. Finally, I also see myself
in the Seeker role. While I have spent years exploring the
meaning and purpose of life, giving birth to Noah was a
catalyst for spiritual exploration for me. His birth prompted
a deep and long-lasting inner journey and exploration of a
spiritual perspective and the Sacred Feminine, rather than
continuing to only dabble.
Molly Remer, MSW, ICCE, ICPFE is a certified birth educator, writer,
and activist. A professor of Human Services, an LLL Leader, editor of
the Friends of Missouri Midwives newsletter, and a doctoral student
at Ocean Seminary College, she has two sons and an infant daughter.
She blogs about birth, motherhood, and womens issues at Talk Birth
(http://talkbirth.wordpress.com). Molly recently published a miscarriage
memoir titled Footprints on My Heart.
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The International Childbirth Education

Assistant to the Editor

Articles herein express the opinion of the author.

VOLUME 27 NUMBER 2 APRIL 2012

The Grief of Caring: Self Care in Helping Grieving Parents of Stillbirth

A Gift of Time: Continuing Your Pregnancy When Your Babys Life

Volume 27 Number 2 April 2012 | International Journal of Childbirth Education | 3

The Editors Perspective

nancy I just lost. His face immediately contorted into a look

4 | International Journal of Childbirth Education | Volume 27 Number 2 April 2012

Across the Presidents Desk

Brief Writers Guidelines for the ICEA Journal

For more information for authors please

Volume 27 Number 2 April 2012 | International Journal of Childbirth Education | 5

Executive Directors Letter

Effective mentors help turn personal values into practice.

6 | International Journal of Childbirth Education | Volume 27 Number 2 April 2012

Providing Hope and Healing

the grieving process? What are we as

Volume 27 Number 2 April 2012 | International Journal of Childbirth Education | 7

Meet the Board

Follow ICEA Online

Join us today! Get connected!

It doesnt matter how long a

8 | International Journal of Childbirth Education | Volume 27 Number 2 April 2012

bereavement cause not just in the US

Volume 27 Number 2 April 2012 | International Journal of Childbirth Education | 9

The Grief of Caring:

Self Care in Helping Grieving

Keywords: stillbirth, self-care, health professionals, grief

professionals who must assist the parents in their grief but

The Professionals Grief

Abstract: The National Institute of Health

continued on next page

10 | International Journal of Childbirth Education | Volume 27 Number 2 April 2012

The Grief of Caring

For the Parents Healing

For Your Healing

Pain is inevitable in such a case and cannot be avoided.

General Strategies for Individual Self Care

Good self-care is an essential foundation

Volume 27 Number 2 April 2012 | International Journal of Childbirth Education | 11

The Grief of Caring

Be Proactive in Addressing Burnout

The acknowledgement of losses

life (Kahn & Saulo, 1994). Create a support network of

It is essential to create a personal life

12 | International Journal of Childbirth Education | Volume 27 Number 2 April 2012

The Grief of Caring

continued from previous page

Parkes, C. M. (1986). Orienteering the caregivers grief. Journal of Palliative

Rdestad, I. (1999). When a meeting is also a farewell: Coping with stillbirth or