• SOFT Support Organization for Trisomy  18, 13 and Related Disorders Trisomy 13 Facts  & A Guide for Professionals  Trisomy in Review, Trisomy 18, 13, and Related Disorders Research Newsletter 1-7. 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 individual condition.

• 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.

• 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 Pediatrics

• 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

• 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.

• 323 days - In the face of a grim prognosis: love and compassion, grace and strength
  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.

(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