Sofia-Rose's SDU Story

Sofia-Rose's family talks about finding hope at CHOP after learning their unborn baby had spina bifida, and their experiences delivering in CHOP's Garbose Family Special Delivery Unit. Read her full story.

Transcript

Sofia-Rose's SDU Story

Sofia Rose's Mom: We came here when she was diagnosed with spina bifida. We had no clue what it was. Doctors pretty much told us that she was going to be a vegetable, that she would never live a normal life, that she’d be in a wheel chair; it could possibly mean feeding tubes. When we got referred to Children’s Hospital, they gave us a better chance at hope. They gave us the ideas of what her possible outcome on life would be.

It’s been a rollercoaster, with finding out when she had the spina bifida to where she is now. CHOP’s definitely given us hope. She has the ability to do things like a normal child. She can sit up on her own. She can roll over. She crawls. She’s starting to stand. To see her do these things that we were told originally were not possible, definitely gives us more hope for the future.

Sofia Rose's Dad: I want her to play like normal kids. I want her to go to college like normal kids, have … have a regular life, and this place means pretty much everything. We’re fortunate to be 7 miles away. So, it’s in our backyard. It’s not the reason why we’re here. It’s really because it’s the best. We feel like family.

Sofia Rose's Mom: Without CHOP I don’t think Sophia Rose would have had the best outcome that she has, and with her now, almost turning 1, she ... sky’s the limit for her.

Topics Covered: Fetal Surgery for Spina Bifida (Myelomeningocele) Spina Bifida Causes, Symptoms and Treatment

Related Centers and Programs: Garbose Family Special Delivery Unit, Center for Fetal Diagnosis and Treatment