This Living with Trisomy 13 site is here to share a DIFFERENT story - Each family tells of the many blessings these Trisomy children bring. We invite you to view our photo albums with children living with Trisomy 13 and read the stories these families share about how they and their children are growing in love. You may contact them as they are here to offer you Support. These are some of the Trisomy 13 - Patau Syndrome Survivors.

Quick Links to Resources Below

Meet some of our Trisomy 13 Families who Provide Support Support & Links for Prenatal Diagnosis of Trisomy 13 Birth Plans - Treatment for Trisomy 13 – Patau Syndrome Complimentary Nationwide Services & Special moments Captured in PHOTOGRAPHY & VIDEOGRAPHY Adoption, Finding Doctors and Other Services Crisis Pregnancy Support - Support for Single and Unwed mothers Bringing a “not viable,” “incompatible with life” diagnosis to Term – Prenatal Hospice - Perinatal Hospice - Palliative Care - Comfort Care Surgical Procedures and Aggressive Medical Treatment Support for those opting for medical intervention for specific abnormalities. Pregnancy - Selective & Early Induction - Elective Termination - Abortion - Fetal Reduction - Selective Fetocide - Therapeutic Abortion - Termination for medical reasons - Elective Tx Genetics - Medical Trisomy 13 and Ethics – Bioethics – Human Rights

Meet some of our Trisomy 13 Families who Provide Support

Would you like to join some Internet Online Message Boards? - access the YaHoo message boards affiliated with this Living with Trisomy 13 site To find other Trisomy Related Internet Online Support Boards and Groups, click here A Mother's letter to newly diagnosed families by Julie Sexton (Paul's mom) Our little Gemma taught us how to love deeper, experience gratitude, and treasure all of the gifts we have been given. She blessed us with 52 minutes in our arms, before her angels took her heavenly. Are you questioning whether you can handle a child like this? Are you in shock? Elizabeth, mother of 8 children, shares her story, "Encouraging you to take the road less taken" Contact Elisabeth for support - The Slotkin Family - Elisabeth was counseled to abort her child with Trisomy 13. She chose to carry her baby full term and tells of the blessing she received for the brief time she had their Katie. She is available if you have been recently diagnosed with carrying a Trisomy 13 child. You may call or e-mail her for support. Click here to read the letter by Elisabeth Slotkin. A father's perspective on having a Trisomy 13 child. Beautiful photos of Katie narrated by her Dad, Steve Slotkin Amaya Faith Lynch God's plans are always perfect and we know that Amaya's life will be used in a glorious way. We have already seen her make such an impact on so many people... Luke Steven Prothero We had a whopping 8lbs 5oz boy, 3 days passed term, who showered us with beauty and love for 58 hours and 13 mins, if I could do it over a million times I could ask for no more. Devon communicates with a little sign, gestures, PECS (Picture Exchange Communication System ie: exchange a picture of a cookie for a cookie. Etc)…and most recently with his newly acquired assistive technology…his Tech Talk (compliments of Noah’s Never Ending Rainbow). Rebecca's family was not aware of her trisomy 13 translocation diagnosis till she was 11 years old. Because they weren't aware of the diagnosis, this allowed her to have the craniofacial surgery when she was eight-and-a-half months old. A procedure normally not offered to children already diagnosed with Trisomy 13.

Support  & Links for Prenatal Diagnosis of Trisomy 13

Katherine Elizabeth Foundation exists to provide Hope, Support, and Healing to the families that have encountered a negative or fatal prenatal diagnosis through the term of their pregnancy, after birth, or in the event of a pregnancy loss through a miscarriage, stillbirth, or newborn death. Liz mom to Katherine was inspired to begin this support Foundation. Trisomy Oz Prenatal Support A website inspired by the life of Daniel Sean Sheffield. Dedicated to all those with trisomy 13 and similar disorders, whether they be long-term survivors or treasured memories. And to any parent who has ever received a difficult prenatal diagnosis. Trisomy Oz offers global support and is based in Australia. Fetal Development- 1st, 2nd and 3rd Trimester images -Your infant will develop everything from limbs to vital organs. Week by week the changes are astounding! View to see what's happening with your baby now! Listen to your BABY - Fetal Doppler Rentals Be Not Afraid is an online outreach to parents who have received a poor or difficult prenatal diagnosis. The family stories, articles, and links within this site are presented as a resource for those who may have been asked to choose between terminating a pregnancy or continuing on despite the diagnosis. The families faced the same decision and chose not to terminate. By sharing our experiences, we hope to offer encouragement to those who may be afraid to continue on. This site also provides - a message board and resources In 2007, Benotafraid.net  affiliated with Elizabeth Ministry International, a movement of Catholic faithful primarily serving women and their families through the joys, trials, and sorrows of their child-bearing years. As a specialized Elizabeth Ministry affiliate, we continue our mission of offering encouragement, information, and life-affirming support to parents who receive "bad news" about baby through our website outreach. We are very excited about this affiliation and will be looking forward to developing new possibilities to serve families. Prenatal  Partners for Life - Providing family support, support links and encouragement for expectant parents or new parents of a special needs  child.  There are few things more frightening in life than finding out  your baby may not be healthy. We are parents who have been through similar circumstances and we want to offer our support. We are here to help you, you are not alone! Pre-Natal Support - Carrying to Term Resources This site in very informative - I highly recommend reading this page if you are recently diagnosed with a Trisomy 13 (Patau Syndrome) child. Lorie, has three Trisomy 13 support sites, with message boards and chat Kia's Site  -  Trisomy 13 MSN Support Site  -  Kia's Tripod Site  - Kia's Song - A very moving video of Samuel Steel Schwartz...Embracing God's little Miracles. Twin Support Are you having twins? One or both diagnosed with Trisomy 13 - Patau Syndrome? Gina, a trisomy 13 diagnosed twin- survived 9 days. She was born with a proboscis and could not breath on her own, having no nose. She also had cyclopia, She liked to be cuddled, and holding her was a pure joy, for she was precious to me and I know she was precious in the sight of God. Inspired by Angle Gina, A Mother’s Heart Ministry Offering support, compassion, encouragement and hope. Have you experienced the death of a young baby or child? Infertility, An Adverse Prenatal Diagnosis? Are you Choosing to continue your pregnancy? Post Abortion Support, healing from the wounds of Abortion. Support Groups. Carrying to Term When your Baby has a Serious Diagnosis - Resources and Support http://www.graceannenugent.netfirms.com/resources.html  http://www.t18moms.com/guests/CarrytoTerm.pdf Carry to Term with a Negative Prenatal Diagnosis - Coping with Grief, Finding Help, Why Carry to Term?, Common Fears, and message board. Tips on creating your own memorial website My Child, My Gift: A Positive Response to Serious Prenatal Diagnosis A well-researched yet easily understandable, positive guide when you need to make sense out of what seems to be senseless. Baby Center Continuing a Pregnancy with Poor Prenatal Diagnosis - Carrying To Term Tips, Site Links and more, Carrying to Term 101 - A "Must Have" if you are Carrying to Term (brochure) From SOFT'S support site for Trisomy COMMON PROBLEMS OF BABIES WITH TRISOMY 18 OR 13 Feeding Difficulties Slow Post Natal Growth Irritability and Constipation Low Muscle Tone & Neurological Problems Common Chronic Illnesses and Problems Congenital Anomalies Usual Reported Causes of Death Long Term Survivor For the Professional Recommended Medical Care FREE ~New Family Package from SOFT The Haberman Feeding System  - Specialty Feeding Products for Cleft lip/Cleft Palate Although most mothers and babies can breastfeed without special assistance, sometimes occasional help is needed. Premature babies, failure-to-thrive babies, and babies with specific impairments, such as neurological challenges, may require extra attention. Infants with severe feeding problems can also benefit from specialized feeding products. BMJ Helping Doctors make better decisions The parents' journey: continuing a pregnancy after a diagnosis of Patau's syndrome Clinical Review Louise Locock (19 November 2005) Keeping the baby; Parents need good support and understanding clinicians in Trisomy 13 and other severe disabilities. Dr Josephine Venn-Treloar, Dr Adrian Treloar (16 December 2005) For more Informational Articles on Trisomy 13 & Patau Syndrome click here for the Healthcare Professional Page MISS Foundation ~ Silent Birth, Stillbirth and MISSing Angels Video

Birth Plans - Treatment for Trisomy 13 – Patau Syndrome

-- Birth Plans - AGGRESSIVE TREATMENT-- What is Aggressive Treatment? ~Treating specific individual and specific related issues one at a time. Josiah's family (phone contact available) does not believe in "compassionate care". That is a term coined to let your child die. We believe in taking care of your child as though we would care for any of our other children. Full Story off their own website Natalia’s family did not know prenatally of her diagnosis. Surprised at birth faced with the choice to allow her to die or aggressively treat - there was no question. “We would treat her the same way we were treat any of our other children, if in a car accident and needed medical intervention. She deserved the same chance at life, her unique life” We believe with the advances in medicine and powerful prayer, anything is possible. With Faith in God and accepting his never ending grace and mercy, we knew we could travel this journey of the unknown, just as we do with our typical children. If she was meant to survive, we knew God would sustain us. Natalia’s had several surgeries and come through them all beautifully. Pain meds help with the initial post surgery pain just as you would give to any child or adult. She has a content and happy demeanor and her smile lights up a room! Katherine's Birth Plan We made a firm decision to carry our baby to term and keep her alive as long as possible, doing what is medically necessary to treat her various conditions with the end goal of bringing her home alive. Birth Plan for Samuel Charles Mabeus Our Son was diagnosed with Mosaic Trisomy 13 at approx 18 weeks gestation. As of this day, no abnormalities have been found by our Perinatologist via ultrasound. We want our Son treated aggressively. -- Birth Plans- Comfort Care – PALLATIVE CARE -- Gemma’s Birth Plan (Gemma’s mom gemmatherese@yahoo.com has compiled many birth plans available on the internet) Kia’s Birth Plan  Are you in shock, devastated and can't believe this is happening to you ...Not quite sure you are ready to raise a special needs child? Know you are not alone and be not afraid of the unknown. With Courage and Grace you can bring your child to term and lovingly share some precious moments. Many of these children do survive till birth...It is then that you will need to make more decisions. Here you can see how Lorie and Gaymond put together a BirthPlan for the immediate care of Kia at her birth. Grace Anne's Birth Plan diagnosed prenatally with Trisomy 18 - Edwards Syndrome. Both Patau & Edward Syndrome share the same "incompatible with life" diagnosis. Grace Anne was born by elective C-section and lived for 62 days. We got much more than we ever dreamed. Trisomy 13 Planning Pages – Making a Birth Plan – Preparing for a Plan of Care Conference Cornerstone Communities of Emmanuels Foundation (EF) offer support, friendships and guidance to families in a pregnancy or with an infant having a rare or difficult medical diagnosis; EF helps families to tap into community resources to meet emotional, spiritual and medical needs in a timely manner.  Building stronger communities, striving together to support families through critical issues, companion parents in their emotional journey and encourage parents to be their child's best advocate.  Cornerstone Communities are more than just EF volunteers helping families; it is network of independent organizations that offer their time and talent to support families in various situations.  EF facilitates Affiliates, Sponsors and also external links to world wide community resources while providing a centralized forum for communication.  PDF Brochure; PDF About Us Package FAQ Frequently Asked Questions Finding Support Resources for your Special Needs Child Federal & State Programs, Early Intervention, Financial Assistance Programs and more resources for disability related issues.

Complimentary Nationwide Services & Special moments captured in PHOTOGRAPHY & VIDEOGRAPHY

CaringBridge Free, personalized websites that support and connect loved ones during critical illness, treatment and recovery. A wonderful way to keep your relatives and friends updated of the day to day experience of Living with a Trisomy 13 diagnosed genetic profile, sharing your journey. We can link to your CaringBridge website off your child’s LWT13 album page. Not Compatible with Life, a diary of keeping Daniel, By Kylie Sheffield - Kylie (mom to Daniel) would love to share her book with you. Please email her for more information.  shefs@aapt.net.au FREE Gemma's Bears are intended to be a gift of love for babies and families who have been given the difficult diagnosis of Trisomy 13 or 18, both of which are considered by most doctors to be fatal, although some babies can and do survive. It is our hope that through these gifts of love, the parents of these special children will remember that their child, is indeed a precious "Child of God".  To receive your gift of love inspired by Gemma click here. The American Child Charity Photographers Guild - A non-profit, volunteer based organization of child photographers from all over the country  who have come together to form a guild dedicated to children in need and their families. They include nearly 300 photographers and collectively provide families in need with thousands of fine art portraits, capturing and preserving tender moments of their young lives. Katherine Elizabeth Foundation  Providing hope,  support, and healing to the families. We'd love to send you a  Bunny. Kambry's Light  - lighting the way for families experiencing prenatal lethal diagnosis The mission of A Butterfly’s Touch is to share the compassion of Jesus Christ by providing support to parents experiencing infant-loss during their time of need. We accomplish this by providing memory boxes and remembrances for the parents; providing information and support through our free lending library and; helping to lessen financial burdens through a fund to help with funeral and burial expenses. Footprints Photography - Provides desperately ill infants and children in their areas with terminal illnesses with complimentary portrait sessions.  Now I Lay Me Down to Sleep - Infant Bereavement Photography - A nationwide 501 (c)(3) non profit organization.  No fees for the Photography services. The soft, gentle heirloom photographs of these beautiful babies are an important part of the healing process. They allow families to honor and cherish their babies, and share the spirits of their lives.  (See the beautiful photos they did for our treasured memory Gabriel Olson) Soulumination - celebrates the lives of children facing life threatening illnesses by providing professional photographs—free of charge—of these children and their families. Puget Sound area, Canada, New Jersey, and Oklahoma. We are a small non-profit organization located in Seattle, Washington.

Adoption, Finding Doctors and Other Services

Click here for a referral list of Doctor's/Physician's & Midwives that have worked with our Trisomy Children. Adoption and Home Schooling Special Kids (NATional Challenged Homeschoolers Associated Network). They have an "arm" called CHASK (CHRISTIAN HOMES AND SPECIAL KIDS) which matches people who have, or are expecting, special needs children they feel unable to care for with Christian families eager to adopt them. Continuing Adoption support newsletter. CHASK - Christian Homes And Special Kids Adoption Resources - They match parents wanting to care for/adopt special needs babies/children (even if the baby/child has a poor prognosis) with parents/expectant parents needing a home for their child.  call: Birth Parent's Line 1-800-266-9837 Contact CHASK 208-267-6246 Meet two of our Trisomy 13 children who have been lovingly adopted. Mollie Faith Havlik and Joey Lane Huddleston Reite

Crisis Pregnancy Support - Support for Single and Unwed mothers

Presbyterians Pro-Life Research, Education and Care, Inc. ...committed to restoring the Church's witness and ministry in response to questions about life. Other Pro-life sites Helpful Resources for parents who have received a serious prenatal diagnosis. LIFECALL  Resources for Pregnant Women and Their Babies - NATIONAL CONTACTS Directory of Shelters for Pregnant Women - Through God's Grace, we save babies lives and shelter their young mothers while providing education and ongoing compassionate support services. We further educate young people to make healthy life choices.  We also shelter women who are homeless, sick and elderly and we help them to restore their dignity.

Bringing a “not viable,” “incompatible with life” diagnosis to Term – Prenatal Hospice - Perinatal Hospice - Palliative Care - Comfort Care  -Interruption (women choosing to interrupt their pregnancies)

Helping families with infants who have fatal or serious birth defects for which selective termination and late term abortion is sometimes recommended. Perinatal Hospice Movie (Choices Medical Clinic) A physician's practice which specializes in saving babies from violence of abortion. Choices Medical Clinic empowers women to avoid having an abortion by providing prenatal medical care, social services, education, practical support and adoption information - all at no charge! As the only medical clinic in Kansas specializing in unplanned pregnancy, and one of only a handful in the United States, our location next door to a nationally recognized late-term abortionist provides us with even greater opportunities to serve mothers and their families at this critical point in their lives.  Our team of physicians, nurses, social workers and other trained volunteers specialize in offering confidential, individualized care and compassion in assisting mothers and families in making God-honoring, life-affirming decisions. We hope to provide the best choice-the only choice that makes sense and the only choice that gives life.  Perinatal hospice/palliative care programs and services  A perinatal hospice approach walks with these families on their journey through pregnancy, birth and death, honoring the baby as well as the baby's family. Even in areas without a formal program, health professionals and family and friends can offer support in the spirit of hospice Prenatal Hospice - It is a multi-disciplinary approach to helping families with infants who have fatal or serious birth defects for which late term abortion is sometimes recommended. It is the Life Affirming, Positive and God-honoring way to care for a baby that will die during birth or shortly thereafter. Comfort Care - Palliative Care vs DNR - Providing a resource for professionals, patients and their families regarding end-of-life decisions. Whether the decision is about CPR, artificial feeding tubes, hospice, living wills, nursing home placement, ventilators or dialysis, these decisions can be difficult. Prenatal Hospice:  A gift of time. Resources for continuing a pregnancy following a terminal prenatal diagnosis. Alexandra's House - is a charitable perinatal-infant hospice house and refuge for abandoned or neglected babies. Our first focus is to provide spiritual, grief and practical support to families pregnant with terminally ill babies and for families whose babies are diagnosed later with a terminal illness. We attend medical visits, develop compassionate and comprehensive birth plans, go to labor and delivery, maintain vigils through the babies' death, bathe and dress the babies, and participate in funerals and in long-term bereavement care. Choices Enabling women to avoid abortion by providing for their medical social spiritual and practical needs. This program is Life Affirming, Positive and God-honoring way to car for a baby that will die during birth or shortly thereafter. Trinity Hospice  Physical, Emotional & Spiritual Care Perinatal hospice/palliative care programs and services As prenatal testing becomes increasingly routine, more parents are learning devastating news before their babies are born. In too many places, the ability to diagnose has raced ahead of the ability to care for these families and their babies. But in a beautiful and practical response, some pioneering hospitals and hospices around the country are starting perinatal hospice or perinatal palliative care programs for families who wish to continue their pregnancies with babies who likely will die before, during, or after birth.

Surgical Procedures and Aggressive Medical Treatment Support for those opting for medical intervention for specific abnormalities.

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. MiCleft A cleft Advocate Pathfinder Partner Organization. The MiCleft site and services herein, are available to everyone: Persons born with a facial difference; Parents and family members of a child with a facial difference; Childcare and Medical Professionals; Students and the general public. Share your cleft lip smile Holoprosencephaly (HPE) Support - “If the parent understands what they’re getting into, the risks, and the range of potential problems, I will help them, no matter what. If they want to be aggressive, I will support them, or if they just want palliative care, that is okay as well. Most of the families that see me come because they want treatment. They want to do the most that they can, whatever that most is. I try to help those that choose to go ahead with the pregnancy or those who did not have a prenatal diagnosis.” Dr. Eric Levey, Kennedy Krieger Institute 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 Congenital Heart Information Network - CHIN - To find the particular heart defect that you want information about (as well as stories about the child and specific treatment chosen) then select 'search' on the left column and type in a few words to describe and it will bring up stories, pictures and information pages to choose from. Congenital Heart Disease - Anatomic defects of the heart and great vessels produced at various stages of fetal development and present at birth. ATRIOVENTRICULAR CANAL DEFECT,  VENTRICULAR SEPTAL DEFECT, UNDERDEVELOPED LEFT VENTRICLE SYNDROME, TETRALOGY  OF FALLOT, TRANSPOSITION OF THE GREAT ARTERIES, COMPLEX CYANOTIC CONGENITAL  HEART DISEASE, AORTIC VALVE STENOSIS, PULMONIC VALVE STENOSIS, PERIPHERAL  PULMONIC STENOSIS, PATENT DUCTUS ARTERIOSUS, COARCTATION OF THE AORTA,  PERSISTENT TRUNCUS ARTERIOSIS Prenatal Partners for Life - Congenital Diaphragmatic Hernia (CDH) Stories - Survivor Stories and resource links to CDH Support Real Hope for CDH - Learn about The 92% Survival Rate for CDH Babies Born at Shands Breath of Hope  exists to combat the congenital diaphragmatic hernia birth defect. Breath of Hope Yahoo Group Message Board

Pregnancy - Selective & Early Induction - Elective Termination - Abortion - Fetal Reduction - Selective Fetocide - Therapeutic Abortion - Termination for medical reasons - Elective Tx - Interrupt Pregnancy

A Different Kind of Crisis Pregnancy: When There is “Bad News” About Baby Article By Monica Rafie, founder and administrator of BeNotAfraid.Net  Rachel’s Vineyard - Healing the trauma of Abortion and Termination for medical Reasons This is a wonderful support site and program for those who have had an abortion, and for those who felt pressured to terminate for medical reasons. Often there are many Symptoms of Post-abortion trauma  - Helpful Resources - Support for men Forbidden Grief The Unspoken Pain of Abortion - It's time to move beyond the politics of abortion. For more than 30 years, our nation has argued about abortion. In that time, over 30 million women have had one or more abortions. While the political battle rages, little has been done to address the emotional needs of those who struggle with feelings of grief, shame, guilt, feeling judged by others. Instead, social taboos stifle discussion of abortion-related feelings. Women are left feeling isolated, and their recovery is inhibited. Forbidden Grief provides the reader with the most up-to-date research on abortion, and tells the inside story of the fight within the psychiatric community to recognize post-abortion trauma. Forbidden Grief is a compelling, haunting review of Dr. Theresa Burke's experience in counseling hundreds of women for abortion-related emotional problems. Dr. Burke exposes the obstacles in the way of post-abortion healing, reviews the full range and depth of post-abortion adjustment problems, and illustrates how we can create a more understanding and healing society where women will no longer be required to hide their pain. Prenatal Partners Second Thoughts Resources, Second Thoughts Stories Silent No More - Do you regret your abortion? Do you regret your termination? What are the Goals of the Silent No More Awareness Campaign? Educate the public that abortion is harmful emotionally, physically and spiritually with lasting consequences. ABC Link This creative, national film commercial is the first television public service announcement concerning the abortion/breast cancer link. The goal is to inform the public about the abortion/breast cancer link and provide access to research.  According to the commercial's sponsor, Dr. Joel Brind of the Breast Cancer Prevention Institute: "Over 40 years of research and 28 medical studies show a significant link between abortion and breast cancer. Studies show that the increased risk of breast cancer can be 50% or more." Abortion Breast Cancer - Women were never told about their findings. As of 2006, eight medical organizations recognize that abortion raises a woman's risk for breast cancer, independently of the risk of delaying the birth of a first child (a secondary effect that all experts already acknowledge). An additional medical organization, the Association of American Physicians and Surgeons, issued a statement in 2003 calling on doctors to inform patients about a "highly plausible" relationship between abortion and breast cancer. General counsel for that medical group wrote an article for its journal warning doctors that three women (two Americans, one Australian) successfully sued their abortion providers for neglecting to disclose the risks of breast cancer and emotional harm, although none of the women had developed the disease. Real Choice - Abortion Methods, Graphic Photos, Statistics, Laws, Links, Perinatal Hospice,  Protecting yourself and Your unborn child. Concepts of Truth - Hurting from Abortion? 24/7 Confidential Help – Phone support National Helpline for Abortion Recovery - Men and Women support After abortion Life after abortion: News, opinion, personal experience, resources. Real Choice - Trisomy 13, 18, & Related Disorders - Links to information and support for parents whose child has been diagnosed with Trisomy abnormality Fr. Frank Pavone has posted two videos on You Tube in which he demonstrates the most common abortion procedures, using the actual abortion instruments and fetal models. We ask you to view and to spread far and wide these challenging videos. The links are as follows: Dismemberment D&E Procedure  -  Suction Abortion Procedure

Genetics - Medical

Congenital Heart Information Network C.H.I.N. is an international organization that provides reliable. information, support services and resources to families of children with congenital heart defects and acquired heart disease, adults with congenital heart defects, and the professionals who work with them. Clinical Genetics  - Patau Syndrome National Electronic Library for Health Pitfalls to Avoid *    Confirm diagnosis cytogenetically, do not rely on clinical diagnosis *    Recurrence risk is significantly increased if there is a translocation which exists in one of the parent, therefore always check the parents chromosomes if the child has a translocation form of trisomy 13 *    Do not rely on rapid FISH results to exclude the diagnosis, always wait for the full culture *    Never tell parents the child will not survive, 3% of children will survive to six months and a small number are still alive at one year, this may have a significant impact on their decisions about the pregnancy *    The absence of congenital heart disease does not necessarily improve the prognosis, it is thought that many die due to central apnoea *    If possible surgery should be avoided until the karyotype is known as this may influence decisions about management. Clinical Genetic  article (Full text -click here) Rare / Orphan Diseases Patau Syndrome  (Trisomy 13)  Extra copy of Chromosome 13

Trisomy 13 and Ethics – Bioethics – Human Rights

INSTITUTE FOR THE STUDY OF DISABILITY & BIOTHICS - Regent University School of Education A multinational response to medical and cultural trends impacting people with disabilities. Breaking News, Newsletters , Disability & Human Rights  & Important Aspects

Wrong Diagnosis - Misdiagnosed

Families who were given a trisomy 13 genetic profile through testing and/or genetic markers, and later to find out it was a misdiagnosis. Living Album pages - Alicia Gartner,  Treasured Memory Album pages – Samuel Mabeus