Surgery Tables and Growth Charts

SOFT’s Trisomy Surgery Registry & Growth Charts

          Register/Report Surgeries  Members: Report a New Surgery Growth Charts For “Ask a Question” Nurses Only Administration
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. 
<<< 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.

  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 ~

An informative article for parents is  Congenital Heart Defect Corrective Surgeries – Overviewon the University of Maryland’s Medical Center website.   It addresses specific cardiac repairs, and is available in both English and Spanish.

 Video: Click here to see a video about Dr. Charles D. Fraser, a Houston surgeon who has completed 10,000 surgeries on children’s hearts, including repairing the hearts of children with trisomy.  Click here to read the Houston Chronicle article about Dr. Fraser. When it opens, scroll down.

  Video:  Cardiac Surgery in Infants with Trisomy 13 and 18 – What are the issues in decision making?  A one-hour YouTube presentation.

 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.