Hi my DD2 was born at 31 weeks with epispadias extrophy complex. She had part of her bowel removed from the outside in her first week and isn’t awaiting surgeries to fix her bladder etc. Tbh I don’t feel like we truly understand what the future holds for her and I just wondered if anyone could tell me what surgeries their kids had and when and how epispadias has affected their life?
Sooooo nervous about all the ops! Praying somebody is familiar with the conditions.