Support Organization for Trisomy 18, 13 and Related Disorders
& A Guide
Trisomy in Review, Trisomy 18, 13, and Related Disorders Research Newsletter
Health Supervision and Anticipatory Guidance for Infants and Children with
Trisomy 18 and 13: Suggested Guidelines
National Institutes of Health Office of Rare Diseases Research Genetic and Rare
Diseases Information Center (GARD)
Treatment suggestions: Treatment of children with trisomy 13 is planned on a
case-by-case basis. The type of treatment given depends on the patient's
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:
USA SOFT (Support Organization for Trisomy) website
Attitudes of Neonatologists Toward Delivery Room Management of Confirmed
Trisomy 18: Potential Factors Influencing a Changing Dynamic
Melanie P. McGraw, MD, Jeffrey M. Perlman, MB
CONCLUSIONS. Until recently, there was universal consensus that trisomy 18
was a lethal
anomaly for which resuscitation in the delivery room was not indicated.
These data indicate that more providers (44%) than anticipated would
consider initiation of resuscitation for an infant with trisomy 18 even with
congenital heart disease. We speculate that support for the best-interest
standard for neonates is diminishing in favor of ceding without question to
parental autonomy. This shift may have profound implications for ethical
decisions in the NICU. Pediatrics 2008; 121:1106–1110 American Academy of
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.
Show Me the Money: Financial Considerations in Responding to Parental
Benjamin S. Wilfond, MD,
head of Ethics of
Seattle Children's Hospital
Watch the Webcast
View presentation (PDF 425KB)
Noninitiation or Withdrawal of Intensive Care for High-Risk
From the American Academy of Pediatrics Committee on Fetus and Newborn
Organizational Principles to Guide and Define the Child Health Care System
Improve the Health of All Children
Amniocentesis: The Struggle to Choose
By Wendy Hogarth, Mother to Jared diagnosed with trisomy 13 at birth.
Patricia Lee June, M.D, Pediatrician and PPL board member
WHAT TESTS SHOULD BE DONE
ONCE MY CHILD IS DIAGNOSED
WITH TRISOMY 13?
By Christine Nelson MD, Pediatric Hospitalist
The parents' journey: continuing a pregnancy after a diagnosis of Patau's
By Louise Locock,
senior qualitative researcher,
Jane & Jon Crawford,
parents of Benjamin
Values in End-of-Life Decision-Making: Some Implications for People with
By Jennifer Fitzgerald , Barrister of the Supreme Court of NSW.
Giving Terminally Ill Babies and Their Families an Alternative to
By Liz Townsend
DIAGNOSIS: FEARS & EXPECTATIONS
by Agneta Sutton, Head of Research
The Centre for Bioethics and Public Policy
by Pediatrician Patricia Lee June, M.D.
Clinical Case - Patau Syndrome and Perinatal Decision Making
Ethics Journal of the American Medical Association May 2005, Volume 7
Different Kind of Crisis Pregnancy: When There is “Bad News” About Baby
By Monica Rafie
Understanding Grief: A Component of Neonatal Palliative Care
Tricia L. Romesberg, MSN, CNNP
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.
323 days - In the face of a grim prognosis: love and compassion, grace
BY ROB WARNER DECEMBER 21, 2008
Exclusive: Twenty Years of Eugenic Abortion
at Ontario Catholic Hospital Special Report presents hospital policy
document approving the procedure
By John-Henry Westen
"My daughter Annie was born with Trisomy
13 and she lived for 80 days. She smiled for the first time 3 days before
she died. We would not have had that time if we had chosen early induction.
I have come to know many families who had a baby who lived only a short
period of time and every minute was unforgettable to them. Nobody has
regrets. Families need a lot of support to carry to term and love their
children until their natural death. The offer of early induction denies
families this precious time and that is a tragedy." Mrs. Farlow has
dedicated a website to
the life of her child:
What is an Early Induction?
In an "early induction" the mother is induced into labor at a point so early
in the pregnancy that even a healthy child would be unable to live outside
the womb without specialized intensive care; under such circumstances, a
severely disabled child will likely not live more than minutes.
|Articles on Eugenics, Ethics,
Selective Abortion, Selective Induction and the killing of Disabled Children
Personal Qualms Don't Count: Hospital Forces Nurses To Participate In Genetic
by MARNIE KO
|Website & Articles for Surgical Procedures for those opting for medical intervention for specific abnormalities.
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?
(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.
- - -
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"
- - -
"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."
- - -
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.
- - -
This is a portion of a speech given by Eagle Forum Alaska President,
Debbie Joslin on the capitol steps, January 22, 2008
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.
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.
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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