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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

How Our Babies have changed our Lives I have been contemplating your question regarding how our babies have changed our lives. I have been putting off answering because I wanted to write something really good - that expressed just how much an impact Melina made when she came into my life that cold winter day back in December. Then I was thinking of a response to an email I had sent a friend the other day, and decided to share that with everyone instead. It starts off with my wonderful friend, writing me and telling me about an envelope mysteriously appearing on her desk the other day, with only a name on it...Melina. She doesn't know where came from, only that it probably ended up on her desk by accident. (Or, she thought, it was Melina saying hello to her.) When my friend saw the name on the envelope, it made her cry, and she wrote me right away and told me she was "devastated" for me that I lost Melina. This is what I wrote her back: My wonderful friend - please don't ever feel devastated for me. Feel  happy / grateful / ecstatic for me that I got to experience being pregnant, giving birth to and taking care of the most incredible little angel ever. Be happy that I am able to say I have a very special little daughter who changed my life forever and has made me a better person. Feel comforted in knowing that I have a special little baby waiting for me up in heaven and when it is my turn to go there, she will be welcoming me with open arms. But be especially ecstatic that out of all the babies in the world, God picked Melina to give to me - even if just for a short while. I know now what it is like to love someone unconditionally and with all my heart. So, please don't feel devastated for me because I am truly blessed. So, I guess that sums up pretty well what Melina has done for me simply by being my daughter. She has given me great strength. If someone had told me years ago that someday I would have a baby who would pass away and that I would actually not only make it through, but would be feeling blessed and grateful, I would have told them they were nuts. I remember there was a time (years ago) when I convinced myself that I never wanted children because I would never be able to survive or handle it if ever anything happened to that child. Not only did I survive, but I am sharing my little girl with the world. That Melina was one amazing kid to have done all that. That's my girl! Love ya turtle - forever. Thanks for changing mommy and daddy's lives. Wouldn't trade you for anything!! Maria Mom to Melina

"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