Expecting A Child Archives - SOFT - Support Organization For Trisomy

Dr. John Carey – Trisomy 13/18 The Basics Dr Carey explains the basics of how a trisomy occurs and the differences between full, partial and mosaic. From the SOFT 2020 Virtual Conference. Dr. John C. Carey Throughout his career, Dr. Carey has been interested in birth defect syndromes and the care of children with these…

Dr. Nicole Birge & Dr. Meaghann WeaverHeartland Cares: Quality of Life and Family Impact in Caring for Children with Trisomy 13 and 18. From the SOFT 2020 Virtual Conference. About Dr. Nicole Birge:Nicole Birge M.D. is the Medical Director of the Neonatal Intensive Care Unit at Children’s Hospital and Medical Center Omaha.Children’s NICU is unique…

From the 2020 SOFT Virtual ConferenceSession 2 of the Professionals Panel Dr. Glenn Green & Dr. Shaji Menon discuss Advances in the Care of Newborns & Infants with Trisomy 18 and 13 Recorded on July 15, 2020. About Dr. Shaji Menon Dr. Shaji Menon is an Associate Professor of Pediatrics and Adjunct Associate Professor of…

A consistent list of problems and concerns has been reported by parents through the years. Viability of their newborn is their first concern, followed by decisions about management of care. Feeding difficulties and constipation are common, often lifelong problems; care of infants with these issues follows below.

Provision of information and links does not constitute SOFT USA’s endorsement of any group. The International Trisomy 18/13 Alliance (ITA) is a volunteer, not-for-profit organization focusing on trisomy 13 and trisomy 18, (also known as Patau and Edwards syndromes respectively). The mission is to offer trisomy 13 and trisomy 18 support groups, physicians and other professionals, accurate…

When your physician first tells you that your baby may have trisomy 13 (Patau syndrome) or that this diagnosis is suspected, you will be overwhelmed with questions. The first question usually is “What is trisomy 13?” This book was written to answer some of these questions, to share insights of parents of children with trisomy…

When your Physician first tells you that your baby may have Trisomy 18 (Edward syndrome) or that this diagnosis is suspected, you will be overwhelmed with questions. The first question usually is, “What is trisomy 18”? This guidebook was written to answer some of these questions, to share insights of other parents of children with…

Birth Plan for Hannah Faith, diagnosed with Trisomy 18 On October 7th 2013, I was 14 weeks pregnant and expecting a call from our genetics counselor to reveal the gender of our third child! Her words, instead changed the course of my life. My child had Trisomy 18. I had never heard of it. But…

Heidi H - Full Trisomy 18 - newborn - L - nicu w mom

A new day is dawning for our kids with heart issues. For years many of our families have had life saving surgeries denied simply because of their child’s diagnosis. Dr. James Hammel at Children’s Hospital in Omaha is looking beyond the label, giving our families hope and our children a chance at survival with life…

Care of the Infant and Child with Trisomy 18 or Trisomy 13 was written for parents who are expecting, living with or remembering a child affected with these disorders. The greater portion of text covers problems and management of care of the live born infant and living child. It has been continually updated as new…