Resources
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…
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Trisomy 18 Long-Term Survivors Survey
If your child with Trisomy 18 is or was a long-term survivor (1+ years) please help with this study conducted by the Trisomy 18 Registry.
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Carter 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…
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Aaliyah Pineda – Trisomy 13
Aaliyah’s life is truly a blessing. She’s our angel. Our miracle baby. A hungry warrior. My baby girl’s name is Aaliyah Esperanz and she has trisomy 13. Ummmm. We didn’t know anything ahead of time. I had a a normal pregnancy – no red flags. She was born 3 1/2weeks early. When she was born,…
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Video – Update 2020 on Seizures, Light Sensitivity and Headaches
Dr. Steven Cantrell – Seizures, Light Sensitivity and Headaches From the SOFT 2020 Virtual Conference Dr. Cantrell’s workshop, Seizures, Light Sensitivity and Headaches will review the many triggers causing seizures and how to protect your child. Nutrition, Eye Protection, and removing triggers around the house will decrease seizure activity. About Dr. Steven Cantrell:Dr. Steven Cantrell…
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Tumor Risk and Surveillance in Trisomy 18
Dr. Stephen BraddockTumor Risk and Surveillance in Trisomy 18. Dr. Braddock discusses Wilms tumor and other conditions that a child with trisomy should be monitored for. From the SOFT 2020 Virtual Conference. About Dr. Stephen Braddock:Dr. Stephen Braddock provides genetic evaluations, diagnoses, and counseling for patients of all ages. This includes services not exclusive to…
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Video – Support for the Grieving Sibling
Laura Lindroth, Director of Programming and Community Engagement at Rainbows for All Children, discusses Support for the Grieving Sibling. From the SOFT 2020 Virtual Conference. About Laura Lindroth:Laura Lindroth is Director of Programming and Community Engagement at Rainbows for All Children, committed to expanding the number of peer support groups, adapting an equitable training and…
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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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