Medical Professionals Archives - SOFT - Support Organization For Trisomy

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…

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.

What should parents and medical professionals know and expect as reasonable health standards for children with Trisomy 18? 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…

As new surgeries are reported, SOFT updates this table with cardiac related surgeries and procedures. This data shows the number of surgeries performed by type of cardiac procedure and by the diagnosis of the child.

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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…

Presented at the 2012 SOFT Conference, St. Louis Dr. Carey began by saying questions were welcomed. He also noted most participants were familiar with the basics of trisomy, so he would emphasize new information. The result was he completed about 10% of his forty prepared slides. The order of information that follows reflects the questions…

Bonnie Baty, PhD, Genetic Counselor at the University of Utah, in collaboration with SOFT, created the first, and still only, charts with growth curves for infants and children with trisomy 18 and 13. Children’s standardized growth charts are separate for boys and girls. The SOFT charts are a combination of both male and female growth.…