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

• 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.

• 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 Wishes.
  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 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

• Amniocentesis: The Struggle to Choose
  By Wendy Hogarth, Mother to Jared diagnosed with trisomy 13 at birth.

• Post-Viability Abortions
  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 syndrome
  By Louise Locock, senior qualitative researcher, Jane & Jon Crawford, parents of Benjamin

• Values  in End-of-Life Decision-Making:  Some Implications for People with  Disability
  By Jennifer Fitzgerald , Barrister of the Supreme Court of NSW.

• Giving Terminally Ill Babies and Their Families an Alternative to Abortion
  By Liz Townsend

• PRENATAL DIAGNOSIS: FEARS & EXPECTATIONS
  by Agneta Sutton, Head of Research
  The Centre for Bioethics and Public Policy

• Post-viability abortions
  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

• Trisomy 13 Facts & A Guide for Professionals  From the Support Organization for Trisomy  18, 13 and Related Disorders

• A Different Kind of Crisis Pregnancy: When There is “Bad News” About Baby
  By Monica Rafie

• Understanding Grief: A Component of Neonatal Palliative Care By Tricia L. Romesberg, MSN, CNNP

• 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.

Personal Qualms Don't Count: Hospital Forces Nurses To Participate In Genetic Terminations 
by MARNIE KO

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

(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