SOFT’s Trisomy Surgery Registry & Growth Charts
The Surgery Registry contains parent-reported information for over 2,100 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.
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~ Surgery Tables & Growth Charts ~
♥ Table of Cardiac Surgeries Reported to SOFT by parents of SOFT children.
♥ Table of Hospitals where Cardiac Surgeries have been performed (trisomy 18 or trisomy 13 only).
♥ 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 approached about a surgery SOFT provides no personal information, only:
♦ 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. Studies are sometimes done in collaboration with SOFT (such as the cardiac surgery study done in 2000 by Hansen et al.), and information necessary to allow parent contact was provided to the researcher. No data was used without family permission.Ann Barnes maintains the Surgery Registry and questions can be sent to her by email at Surgery Committee or by phone at 919-933-9981 (leave message with callback number). Please report any previously-unreported surgeries to her.