Surgery and Growth Information
SOFT maintains records of children’s surgeries and also a series of growth charts for children having a trisomy condition. Both may be accessed through this page.
The SOFT Surgery Registry contains information about children’s surgeries, as reported by parents on the SOFT membership/renewal form. Surgery data collection began in the late 80’s and is ongoing today. The registry has over 1500 surgeries and procedures reported for all diagnoses in the database.
<< To add a child’s previously unreported surgery to the SOFT Surgery Registry, please click here. >>
Two articles might also be of interest:
Ethical Rounds: An infant with trisomy 18 and a ventricular septal defect
Cardiac Surgery in Patients with Trisomy 18
Click here to access the surgery registry summary
SOFT also has a collection of growth charts for children with trisomy 18 and for trisomy 13, to include weight, height (length) and head circumference charts for each. These result from a study conducted by Bonnie Baty, PhD, of the University of Utah and they may be printed (as .pdf files) and taken to the child’s physician.