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Embracing Life - One Moment at a TimeTM LivingWithTrisomy13.org Ironman for Kids - The Living with Trisomy 13 Community thanks Michael Hennessey for helping to raise awareness for Trisomy 13 and other related disorders. See Video & Details>	Photo Albums, Videos & Updatess Children & Adults Living with Trisomy 13 Prenatal Diagnosis Families Treasured Memory Albums... VIDEOS & Presentations Support - Resources - Links Trisomy 13 Support Resources Prenatal Diagnosis Support Considering Termination/Abortion? Grief (Embracing Life) Support IMMEDIATE SUPPORT - Phone & Email NEWS & Site Updates Prayer Requests & Needs Good News & Accomplishments Message Boards Visitor Comments Inspirational Reading For Healthcare Professionals

Prenatal Diagnosis & Birth Diagnosis of Trisomy 13
for Healthcare Professionals, Healthcare Workers,
Midwifes, Physical Therapists, Occupational Therapists

PRINT LETTER January 2007   A letter from ThereseAnn - A parent of a Trisomy 13 child TO: Pediatric Physicians, OB-Gynecologists, Geneticists & Healthcare Providers: As the mother of a very happy and wonderful Trisomy 13 child Natalia (age 6 years; cognitive level 1 year, I have something important to tell you: Some of these children do survive if given appropriate medical care. All too often physicians decide that Trisomy 13 children "are not compatible with life." Doctors believe they are doing parents a favor by either encouraging abortion or by telling the parents that the procedures used to keep these children alive cause unnecessary pain and ultimately make no difference. I am saddened every time a mother emails me and tells me of her abortion, every time I hear that the doctors foretold "No hope." Physicians, please inform us--but also encourage those of us who wish to choose life for these precious Angels. Every Trisomy 13 parent I've spoken to has wonderful stories of the time they have had with their child . . . even if it was brief. The parents have and receive abundant love from these special children. When they abort, the parents feel an immense loss long after their physicians are gone. All the living Trisomy 13 children I have come in contact with are well and happy. The first year or two is typically rough, not only because the parents have to adjust to their child's special needs, but also because of the added pressure from physicians who insist that these children aren't going to survive. I'll admit, Trisomy 13 children can be a burden to the medical community, and some may even say to society; but is it right to allow these children to die because we do not want to be bothered? I believe our world would be a better place if we did not eliminate those children who require extra time and attention. Trisomy 13 children have the power to help us become more sensitive and compassionate people. The diagnosis of Trisomy 13 can be overwhelming. It is hard to give up the dream of a healthy, normal child. But abortion is not the easy way out that it appears to be. Please, doctors: fully inform your patients that with some added medical intervention, many Trisomy 13 children live happy lives for several  years. These children are special blessings to all who know them.  Please give parents the opportunity to grow from this unexpected and life-changing experience. Thank you, ThereseAnn therese@LivingWithTrisomy13.org LIVING WITH TRISOMY 13 - MIRACLES IN PROGRESS (Photos and stories of families living with Trisomy 13) http://LivingWithTrisomy13.org Please feel free to copy or pass this letter on--especially to the physicians in your group who may come in contact with parents of Trisomy 13 children.

"I believe that I have never seen the glory of God and the beauty of  humanity more than through the lives of these babies and children and  their parents." ~ E.H.T, MD San Antonio, TX 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 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. 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 Terminations  by MARNIE KO ESSAYS BY TRISOMY 13 PARENTS Free literature to share with your patients 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 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"  ~Katie - Full Story - - - "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 - - - 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 - - - This is a portion of a speech given by Eagle Forum Alaska  President, Debbie Joslin on the capitol steps, January 22, 2008  Full Story

Click here to download printable LivingWithTrisomy13.org "awareness cards." 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     Text and graphics © LivingWithTrisomy13.org 2005-2007 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.   *Disclaimer All material on this site reflects our personal journey with raising a Trisomy 13 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.   Looking for ALL families who’ve had a trisomy child of any number. Whether you terminated, miscarriage, had a stillbirth, live birth - living or deceased. Including adoptive and Foster parents. Please fill out the TRIS survey  to help update the medical literature and to improve the quality and availability of medical care. Tracking Rare Incidence Syndromes (TRIS)  Click here to add your information Translation Search Specific Languages or Countries   Design & Hosting lovingly provided by:: Apke Web Services