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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

To  all Obstetricians & Perinatologists      At  some point in your medical career, you will have a patient come into your  office who’s child will be diagnosed with a rare chromosomal abnormality. You  will find yourselves medically inclined to tell that patient they should not  have this child, as it will never survive, or if it does, it will change their  lives forever. Before you utter those awful words “No hope or incompatible  with life”, stop and rethink things a bit.        Remember this patient has felt her baby move, kick, and squirm. This is a baby! A baby that she already loves and is waiting  for. Please remember this patient relies on you for medical knowledge.  Please don’t abuse this knowledge to persuade that patient into doing  something she may not want to do. Please present the facts of the situation as  you know them, but remembering that you are also only human, and you cannot  possibly know the fate of each child.      Remember  to be kind and compassionate to this patient. What you say to her will affect  her for the rest of her life! Please do not force abortion on this patient.  Remember that it’s her choice not yours. Please allow her to make her own  decision. Please provide her with the resources and support groups in order  for her to do so. Please treat her with the same respect, dignity, and support  that you would give any of your other  patients.      Remember, one day you may find  yourself sitting at your desk and the patient sitting across from you could  possibly be someone that you love, such as your sister, family member, or a  close friend. What will you say then? Will this child suddenly become “Just a  fetus” or” less than human” then? Samuel’s mom, Mary Mabeus Click here for Samuel's page

"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