Posts Tagged ‘Trisomy 13’
Video – 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…
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Video – 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…
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Video – 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…
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Video – 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.
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Video – 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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2020 SOFT Virtual Conference is coming in July
The 2020 SOFT Virtual Conference planning is underway and we are really excited to share our event with you. The team has been working hard to make sure our virtual event feels as much like home as our in-person events do. Because of the virtual format, we have stretched conference out a few days. It…
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Video: Routine Health Care for Children with Trisomy 13
What should parents and medical professionals know and expect as reasonable health standards for children with Trisomy 13? Dr. John Carey, MD and medical advisor for SOFT discusses current medical standards and expectations for children living with Trisomy 18 or Edwards Syndrome. From the 2013 TrisomyTalk.com series of medical webinars. Dr. John Carey, MD and…
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Video – Constipation 101
If you get any two or more parents of children with Trisomy together the conversation will inevitably turn to the subject of constipation. Constipation is one of the most common health issues that families of a child with a diagnosis of Trisomy 18, 13 or other related disorder face. Managing your child’s bowels becomes a…
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Attitudes Toward Hypothetical Uses of Gene-Editing Technologies
The following paper is an interesting article published recently in The CRISPR Journal. The main author, Erika Snure Beckman, performed this work for a Master’s degree while a genetic counseling student at Stanford University. She and her colleagues analyzed the views of parents of persons with trisomy 21, trisomy 18, and trisomy 13 syndromes toward the new gene-editing technologies. The…
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Common Problems of Babies with Trisomy 18 or Trisomy 13
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.
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