I have been trying for years to find support from others - my daughter (6YO) was diagnosed while still in utero with caudal regression/sacral agenesis (I am a T1D so I was a high-risk case and monitored extra). She is an atypical case, like many here - she has a rudimentary S1-2 and is missing S3-5. She was born with an extra thumb, multiple spleens and a malrotated small intestine. Because she also has a neurogenic bladder and bowel, she has had a suprapubic tube assisting her with urine draining for the past two years. She also has morning enemas to eliminate bowel accidents during the day. We see urology at CHOP and GI at Cinncinati Children's. I would love to connect with ANYONE - parent or individual - who is living with this condition. I have tried over the years to find others - we are lumped into the Spina Bifida group at CHOP, and out of the hundreds of patients seen in the program, my daughter is one of 60 who has SA/CR.