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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advice on outdated and inaccurate information about survivability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.
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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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| Physician's Home
Not Compatible with
Life, a diary of keeping Daniel
By Kylie Sheffield
Prenatal
Diagnosis Information Package -
Compiled by Kylie Sheffield (mum of Daniel, full
Trisomy 13) in consultation with families on this web site |
| LINKS FOR PROFESSIONALS FROM
MEDICAL AUTHORITIES |
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Lethal Language Lethal Decisions
By Tracy K. Koogler, Benjamin S. Wilfond, and Lainie Friedman Ross
©
The Hastings Center. Reprinted with
permission. This article originally appeared in the Hastings Center Report,
vol. 33, no. 2 (2003),” Editorial email:
editorial@thehastingscenter.org.
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Intensive cardiac management in patients with trisomy 13 or trisomy 18
Am J Med Genet Part A.
*Intensive cardiac management consisting of pharmacological intervention for
ductal patency and cardiac surgery was demonstrated to improve survival in
patients with trisomy 13 or trisomy 18 in this series. Therefore, we suggest
that this approach is a treatment option for cardiac lesions associated with
these trisomies. These data are helpful for clinicians and families to
consider in the optimal treatment of patients with these trisomies.
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Show Me the Money: Financial Considerations in Responding to Parental
Wishes.
Benjamin S. Wilfond, MD,
head of Ethics of Seattle Children's Hospital
Watch the Webcast

View presentation (PDF 425KB)
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Noninitiation or Withdrawal of Intensive Care for High-Risk
Newborns
From the American Academy of Pediatrics Committee on Fetus and Newborn
Organizational Principles to Guide and Define the Child Health Care System
and/or
Improve the Health of All Children
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Amniocentesis: The Struggle to Choose
 By Wendy Hogarth, Mother to Jared diagnosed with trisomy 13 at birth.
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Post-Viability Abortions
 Patricia Lee June, M.D, Pediatrician and PPL board member
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WHAT TESTS SHOULD BE DONE
ONCE MY CHILD IS DIAGNOSED
WITH TRISOMY 13? By Christine Nelson MD, Pediatric Hospitalist
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The parents' journey: continuing a pregnancy after a diagnosis of Patau's
syndrome By Louise Locock,
senior qualitative researcher,
Jane & Jon Crawford,
parents of Benjamin
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Values in End-of-Life Decision-Making: Some Implications for People with
Disability By Jennifer Fitzgerald , Barrister of the Supreme Court of NSW.
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Giving Terminally Ill Babies and Their Families an Alternative to
Abortion
 By Liz Townsend
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PRENATAL
DIAGNOSIS: FEARS & EXPECTATIONS
 by Agneta Sutton, Head of Research The Centre for Bioethics and Public Policy
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Post-viability abortions
 by Pediatrician Patricia Lee June, M.D.
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Clinical Case - Patau Syndrome and Perinatal Decision Making
 Ethics Journal of the American Medical Association May 2005, Volume 7
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Trisomy 13 Facts
&
A Guide for
Professionals
From the Support Organization for Trisomy 18, 13 and Related Disorders
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A
Different Kind of Crisis Pregnancy: When There is “Bad News” About Baby By Monica Rafie
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Understanding Grief: A Component of Neonatal Palliative Care
By
Tricia L. Romesberg, MSN, CNNP
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Disability
Matters - Blog - Institute for the Study of Disabilities & Bioethics Dr.
Mark Mostert, from Johannesburg, South Africa, is co director of Regent
University’s Institute for the Study of Disability and Bioethics.
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| Articles on Eugenics, Ethics,
Selective Abortion, Selective Induction and the killing of Disabled Children |
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Personal Qualms Don't Count: Hospital Forces Nurses To Participate In Genetic
Terminations by MARNIE KO
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ESSAYS BY TRISOMY 13 PARENTS
Free
literature to share with your patients |
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WHEN WHAT SEEMS BROKEN IS
PERFECT
By Barbara Farlow (Annie's Mom)
The decision to accept
disability:
One family’s perspective
By Barbara Farlow BEngSci MBA
A Letter to: Pediatric
Physicians, OB-Gynecologists, Geneticists & Healthcare Providers, from ThereseAnn - A parent of a
Trisomy 13 child
How Our
Babies have changed our Lives by Maria Demers
A Mother's
letter to newly diagnosed Families
(Printable to have on hand in your office to give to patients) by
Julie Sexton
Message to
All Obstetricians & Perinatologists
Message to All Physicians,
Specialists, and Doctors Alike by Mary Mabeus
Letters to Physicians -Trisomy 13 Survival Tactics -Patients
Plan of Care - Faith in Action -Considerations in Making a
Specified Plan of Care by Janina E. Arritola
How can anyone say that
these children do not contribute to society, therefore what is the point?
by Melissa Roy
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| Website & Articles for Surgical Procedures for those opting for medical intervention for specific abnormalities.
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What is an Omphalocele?
The method of delivery will be discussed with you as the
time gets closer. The method of delivery is dependent on the
size of the omphalocele. If the size is quite large and
especially if the liver is involved, the doctor may prefer
to do a cesarean section (c-section) to avoid the risk of
injury to the liver. Otherwise, the preferred method of
delivery is vaginal."
Decompressive cranioplasty may improve the clinical symptoms
of children with mild trigonocephaly and intracranial pressure:
report of 56 patients - June 5 2004
Mild trigonocephaly with clinical symptoms:
analysis of surgical results in 65 patients
- June 5 2004 |
| Termination, Abortion the only choice?
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(A must read for Physician’s who advise
parents after early testing and prenatal diagnosis) These women share the immense pain a termination has left on their lives.
When counseled by Professionals they were offered no hope. They were not given
the option of carrying to term and holding their child, if even briefly. Nor
offered the compassionate support this diagnosis requires. Instead these women
felt they had to make the heart breaking choice to end their child’s life.
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A Story of Regret - "Maybe if the professionals we had
talked to had given us more information we would have made a different choice.
To this day, I still live with the pain of the choices we made. Trisomy needs to
have a bigger voice and all the professionals need to be more open minded and
not so much on terminating"
~Katie -
Full Story
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"It is a choice I cannot live with to this day. I look at these pictures,
read your stories and my heart aches. Since I had a D&E, I never even got to
see or hold my daughter."
~Laurie-Beth
Full Story
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After experiencing the effects of an abortion with a previous pregnancy,
Elizabeth shares her experiences with carrying to term a child with Patau
Syndrome - Trisomy 13.
~Elisabeth Slotkin
Full Story
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This is a portion of a speech given by Eagle Forum Alaska President,
Debbie Joslin on the capitol steps, January 22, 2008
Full Story |
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