Posts Tagged ‘Trisomy 13’
Newborns with trisomy 13 or 18 can benefit from heart surgery
Republished with permission. Infants with the genetic disorders trisomy 13 or 18 are more likely to survive if they undergo heart surgery, a study from researchers at Stanford and the University of Arkansas has found. Heart surgery significantly decreases in-hospital mortality among infants with either of two genetic disorders that cause severe physical and intellectual…
Read More2021 SOFT Trisomy Awareness Month Video Blast
Join us for the Trisomy Awareness Month video blast! The Trisomy Awareness Month video blast is coming and we hope you will join us. We are going to blast social media with short 60 second videos to inform and educate people about our SOFT kids and their various Trisomy conditions. We invite all of…
Read MoreClaire L – Trisomy 13
We have had a really happy, healthy second year with Claire! She’s been to the beach and is learning to crawl. She loves music, especially Raffi, and is very ticklish. At our 20 week anatomy scan, we were shocked. Our baby’s eyeballs were so underdeveloped, the doctor wasn’t sure if they were there at all.…
Read MoreOmar Gonzalez – Trisomy 13
Though this has not been an easy journey, it is one I would pick a million times over, just to meet our sweet boy. My husband and I first learned something was “wrong” when I was about 11 weeks pregnant, with Omar, who has full Trisomy 13. The doctor told me Omar had fluid in…
Read MoreCarter R – Trisomy 13
“I would do it all again just to have the chance to hold my baby one more time.” On April 4, 2020 my life changed forever. I went into my 13 week ultrasound only to be told the baby was showing signs of Trisomy 13. I had no idea what this condition was, everything was…
Read MoreVideo – Trisomy 13 and 18: The Basics
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…
Read MoreVideo – Heartland Cares: Quality of Life and Family Impact in Caring for Children with Trisomy 13 and 18
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…
Read MoreVideo – Advances in the Care of Newborns & Infants with Trisomy 18 and 13
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…
Read MoreVideo – Perspectives on the Care of Children with Trisomy 18 and 13
From the SOFT 2020 Virtual ConferenceSession 1 of the Professionals Panel Dr. John Carey discusses Perspectives on the Care of Children with Trisomy 18 and 13.
Read MoreVideo – Shining moments from the TRIS project
The first of a series of videos from the SOFT 2020 Virtual Conference. Deborah A. Bruns, Ph.D. shares shining moments from the TRIS project: An overview and review of activities with Deborah A. Bruns, Ph.D. About Deborah A. Bruns Ph.D:Deborah A. Bruns is Professor and Off-campus program coordinator for the Special Education program in the…
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