From Barbara, Hello Group! Curious if any of you or someone you know may have had this happen... My 3wk old baby who was admitted to Rady Childrens Hospital-San Diego NICU with severe abdominal distention & bowel obstruction. She stopped pooping and it ended up taking her 12 days to have a bm, thus developed megacolon... We thought for sure it was HD that caused her to stop moving in the first place... She was tested at 4 weeks via suction biopsy for HD. It was positive for ganglion cells. WE & HER DRs WERE SHOCKED... So she underwent an exploratory surgery at 5 weeks old where they looked for twists, performed an ileostomy and did a second biopsy. Still there was ganglion nerve cells. She was sent home on an ostomy bag for 5 months... They did a manometry study as well as a dye test through her mucus fistula. Oddly we found that the barium from NICU was still residually inside of her months later. When she was 6 months old her colon showed signs of starting to work again & her ileostomy was reversed. Immediately she started pooping perfectly, just like a brand new baby. I asked her surgeon what this condition was called -or what caused all of this mess- and he said it was UNKNOWN... He said he has seen a handful of babies over his 25 years with this same issue and putting them on a bag for awhile always seemed to help. We found out months later that she is most likely has a milk protein allergy. No word yet on weather that could cause this but her surgeon doesnt think its likely. He thinks it is/was strictly a mechanical issue. **My question is has anybody else had a similar situation especially with an exclusively breastfed newborn-ish baby??** Thank you!! (Pics in comments.)
Posted on: Wed, 05 Nov 2014 18:23:33 +0000