Gastroschisis is a birth defect where the intestines and sometimes other abdominal organs such as the stomach or liver are outside the body, rather than inside. This used to come as a surprise after birth, but with the routine use of ultrasound, it now comes as a surprise before birth.
Frankie & Joshua are young parents who have learned that their baby girl, due in January, will be born with disease. This means they can be prepared and be at a hospital that can handle the surgery needed right after birth.
Like so many birth defects, gastroschisis is sometimes mild, small and easily closed, or sometimes large and complicated, and needs to be closed in stages. It might result in losing some part of the bowel and some babies end up with short-gut syndrome. Many babies require feeding by IV, require antibiotics and all need very close monitoring in the early months. When they come home from the hospital, they sometimes need so much care that home health nurses are scheduled to help.
Who can help?
- Avery’s Angels Gastroschisis Foundation, located in the Raleigh, NC area, they can be reached at [email protected] or by phone at 855-692-8379 or 919-400-4595.
- Short Bowel Syndrome Foundation, located in Lincoln, Nebraska. They can be reached at [email protected] or by phone at 402-770-0554.
- Oley Foundation, located in Albany, NY and focused on the needs of those living with intravenous nutrition and tube-feeding. They may be reached by phone at 518-262-5079 or 800-776-6539. They know what you need!
Please note: In 2012, a brand new medicine was developed called teduglutide or trade name Gattex, that has enabled some individuals who have been dependent on parenteral nutrition to live much more normal lives!
