Malrotation of bowel

[Nurse15]

After many many months of feeding difficulties in my baby we've finally had a diagnosis of malrotated bowel. She's 7 mo this old. Anyone had any experience of this? We're now waiting to see the paediatric surgeon at a different hospital than the one where she was diagnosed!

My son was also diagnosed with intestinal malrotation but his was discovered at 6 days old. He's 6 months now and doing really well. Has your daughter had surgery yet?

My MiL, 80 odd years ago! Had surgery at 6 months (a big deal back then) and lived happily and healthily ever after.

I think this is what my niece had. Her symptoms were recurring unexplained abdominal pain & blood in stools. Operation when she was 9 or 10m old. Perfect recovery, afaik (now 26yo).

Her (very healthy) half brother has Situs Inversus (internal organs all swapped around). Some other relatives have internal organ anomalies, too.

Thanks for the responses - no surgery yet, the malrotation wasn't found until 7 months old despite numerous hospital admissions etc so we've an appt in January to discuss surgical options going forward, the hospital where it was diagnosed doesn't have paed surgeons so this is at the paeds hospital. We've had some short conversation with the surgeon so far who doesn't seem keen to intervene until she is older however he has said we are not to take her on holiday or be more than 30 mins away from the hospital where he practices so it's quite limiting. Her feeding is also poor but weight gain not terrible. More worried as I am due back to work in 5 weeks and not sure what's going to happen at the minute!

Just looking for some actual experience really with the surgery / recovery etc!

@dollygolightly would you mind if I pm'd you a few questions?

Hi. My DC had a malrotation that was diagnosed and had to be operated on at less than a week old. Constantly crying when lying flat and sick that was basically bright green as it was full of bile. I really feel for you not knowing what will happen regarding surgery, the stress of not being too far from a hospital would be really hard. My DC was bad enough to need it immediately but I now have a happy and very active 10 year old! The recovery period was relatively easy, especially as DC was so small.

No I don't mind, ask me any questions. Hope I can help.

My son had it, wasn’t discovered till he was 7 though, years and years of sickness and hospital visits etc, he was literally a skeleton, had his ladds procedure and lost part of his bowel because it had died off, he’s now 10 and like a different child! Amazing surgeon who we still see once or twice a year because he likes to keep check on him xx

Sunny did your child have a Volvulus? That sounds just like how my son was. Did you ever have any problems with adhesions after surgery?

Dolly, they said it was just (!) malrotation. When I think about it now, and it feels so long ago, I’m not sure how it wasn’t volvulus as well as nothing was leaving the stomach in the normal direction and the operation was done a few hours after diagnosis. I think it was maybe that they were worried about it twisting. Adhesions haven’t been a problem at all and, touch wood, everything has been good. It’s just one of those things that I’d never heard of and there isn’t a lot of information out there about. Our surgeon wasn’t concerned about the operation and said it was relatively common, occurring in about 1 in 3000 births. Dolly, hope your son continues to do well.
Nurse, hope your daughter gets to have her surgery, if that’s what the doctors feel she needs.