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Not
Compatible with Life,
a diary of keeping Daniel
By Kylie Sheffield
Kylie (mom
to Daniel) would love to share her book
with you. Please email her for more information.
shefs@aapt.net.au
Book Launch – Not Compatible with
Life: a diary of keeping Daniel
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The
first time I heard the term ‘trisomy 13’ was in March last year when I
went for a routine second trimester ultrasound and was told that my baby
most likely had a chromosomal disorder considered to be ‘not compatible
with life’. By the time amniocentesis returned a full diagnosis, I was
almost twenty-two weeks pregnant, giving Paul and I a little over a week
to decide whether to end or continue my pregnancy.
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Those
first weeks following detection and diagnosis were the most confusing
and traumatic of my life, largely because there was no information on
trisomy 13 readily available to us. There were no pamphlets, books,
information packs, or doctors who specialised in the condition. Since we
were not going to end our baby’s life based solely on what little we
knew; or just because that was the usual course of action, we decided to
do some research of our own, and learn as much as we could about the
likely symptoms and outcomes for babies like the one I was carrying.
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What
we found was this:
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Many trisomy 13 babies not only make it to term, but live for days,
weeks, months and even years.
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Of
those parents who continue their pregnancy—even those whose babies
are stillborn or live just a few minutes—the vast majority are
deeply grateful for the chance to hold and care for their child,
however briefly.
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Many of these parents have been encouraged and, in some cases,
pressured to terminate by doctors and specialists who base their
advice on outdated and inaccurate information about survivability
and quality of life.
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Some women who choose to end their pregnancy following a trisomy 13
diagnosis are offered no counselling or grief support prior to or
after the procedure, and many of them later regret their decision.
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We
decided to keep and love our baby for as long as we could. I had
a beautiful, healthy pregnancy and Daniel was born at home, ten minutes
before 7pm on 7/7/07. He was with us for 32 hours before dying
peacefully in my arms.
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Thankfully, I was supported by sympathetic and caring medical
professionals throughout my pregnancy, with my homebirth midwives in
particular, providing incredible emotional support. But many mothers in
my situation haven’t been so lucky.
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There
are doctors who believe termination is the only acceptable course of
action when a prenatal diagnosis reveals a condition like trisomy 13,
arguing that it’s to the parents’ advantage to prevent the birth of a
baby who will die immediately or face a life of severe disability. I
would suggest that these doctors fail to consider the emotional impact
of terminating a pregnancy, especially one that has progressed well into
the second trimester. They also fail to acknowledge the fact that some
trisomy 13 babies, albeit a very small number, do survive and thrive.
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I’m
not trying to sugar-coat the realities of living with this
condition—many survivors require multiple surgeries, continuous
medication, and ongoing specialised care from their families and medical
teams. But their lives are far from the vegetative state doctors once
predicted as the only possible outcome.
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In
writing this book, it was never my intention to criticise the decisions
of any parent who has received a difficult prenatal diagnosis. But
parents in this situation have a right to good information and
accessible emotional support. To decide to end a pregnancy with all the
facts and a strong support network behind you is one thing, but to make
this sort of decision because you didn’t know there was any other choice
is something else entirely. Most importantly, it needs to be
acknowledged that regardless of the circumstances, parents who make this
choice have lost their babies too, and that their grief is real and
often long-lasting.
·
This
book is a celebration of the life of our son Daniel, who lived for just 32
hours, but changed our lives profoundly and irreversibly. I published it
not because I want every parent who receives a difficult prenatal
diagnosis to make the same choices we made, but because I want every parent
who receives a difficult prenatal diagnosis to know that they have
choices. |
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Living with Trisomy 13
Focused on prayerful support and gifts of love
to those touched by a Trisomy 13 child.
Inspired By An Angel
Attn: LivingWithTrisomy13
15802 Springdale St.. #68
Huntington Beach, CA 92649
info@LivingWithTrisomy13.org
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All text and graphics ©
LivingWithTrisomy13.org 2005-2010 - all rights reserved
Use prohibited without permission
All information found on this site was submitted to
us directly by the families
and used on this site with their permission. |
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Cover photo of Pamela Sullivan & her precious daughter Maria, copyright Pamela
Sullivan 2004, used with permission. |
If We Hold On Together Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.
Used with permission.
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*Disclaimer
All material on this site reflects our personal journey with raising a Trisomy
13 (Patau Syndrome) - child. It is not meant to replace any medical advise of a professional
familiar with your specific condition. The personal journeys of any parents on
this site are only their opinions and their own journey with having a Trisomy 13
child. You should consult with your own physician or other medical professional
regarding the opinions or recommendations expressed within these pages as to
your own child's symptoms and medical condition. |
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