SOFT’s Trisomy Surgery Registry
& Growth Charts
The Surgery Registry contains parent-reported information for nearly 3,000 surgeries and procedures. Data collection began in the late 1980’s and continues today. Most requests to SOFT for surgery information are about cardiac surgery.
<<< You can COPY any table’s results, and PASTE it into an Excel spreadsheet, for further manipulation. Open a blank Excel spreadsheet BEFORE doing the COPY. OR: IMPORT the report into Excel (print these instructions, then run the report) >>>
~ Surgery Tables & Growth Charts ~
♥ Table of Cardiac Surgeries Reported to SOFT by parents of SOFT children.
♥ List of HOSPITALS where cardiac surgeries or procedures have been conducted in recent years.
♥ Table of All Surgeries Reported to SOFT, by parents of SOFT children.
Note: As hospitals change policies and as surgeons come and go, some hospitals may or may not currently allow cardiac surgeries for children with trisomy.
♥ Growth Charts for Children with Trisomy You can take these to your child’s physician.
~ Cardiac Surgery Information ~
♥ Congenital Heart Defects: – Explanations of many defects are provided here.
♥ The SOFT YouTube video library contains many videos about cardiac defects and cardiac surgery.
♥ SOFT’s Professional Literature Section: Articles about Cardiac Surgery.
♥ When asked about a surgery SOFT provides:
♦ Total numbers for specific surgery
♦ Diagnosis of children who had the surgery
♦ Reported outcomes
♦ Name of hospital and surgeon name, if available
We respect a family’s privacy. Sometimes a parent will wish to find another family whose child had a surgery. SOFT does not share names without requesting and receiving permission.However, studies are sometimes done in collaboration with SOFT and information necessary to allow parent contact might be provided to the researcher on a confidential basis. Questions can be sent by email to Surgery Committee