Duodenal atresia and waiting for amnio results

[natty1985]

Hi everyone, hoping for some shared experiences and general advice! I was measuring large for dates last week so went on to have a detailed scan which has shown likely duodenal atresia (area of blockage in the bowel). I was so shocked and distraught initially and all I could seem to focus on was a40% association with Down's syndrome and what that would mean for us as a family. I've had an amniocentesis now and awaiting the results. There are no other abnormalities on the scan though and my Downs screening at 12 weeks was low risk. There seems to be a good outcome for babies born with isolated duodenal atresia - has anyone experienced this?

Hi Natty, we're just coming out the end of a very similar experience (there's a thread on here from when I was at pretty much the same stage as you. Our little one did not have any underlying causes for his atresia and the consultant told me when I was having the amnio that the fact that there were no other indications was a good sign. Our DS has been home now from hospital for 3 days and he is now 8 weeks old. It's been a bit of a long haul and it has been so difficult not being able to bring him home, but the hospital were fantastic. He had quite a large blockage and also then got either a secondary infection or colitis caused by milk protein intolerance. The prognosis is good though, as you say, even if the start is a bit difficult. I'm happy to answer any questions

Congratulations and hope you are enjoying having your wee one home! That does sound a long time in hospital! How long were you expecting?
We should have a meeting with the surgeons next week for more info but I'm not sure what to expect yet in terms of how soon they operate or if they do any imaging to work out how severe the obstruction is. What was your experience? And did you go to term or go early? How is feeding working out for you now?

We were initially told 1-3 weeks, but the surgeon said that the bowel was badly stretched above the obstruction so after he'd had his surgery, they said it would be at least 3 weeks. It would have been 5 weeks if he hadn't then got this secondary problem which may or may not have been related to the original problem. They didn't do any additional scanning - they operated the day after he was born.

He was born early, probably because I had a lot of amniotic fluid which is often related to the condition. He was born at 35+5 after my waters broke, but he was a good weight at 6lb 13oz.
He's now on a special formula feed because of his probable protein intolerance. I did express for the first couple of weeks, but I wasn't getting much and life was rather hectic driving an hour each way to hospital and also taking my older DS to and from school. There were others at the hospital who managed to keep it up though, so it certainly is possible if that is your plan. Hopefully your little one won't be in as long as ours either. How are you feeling about it all?

I'm feeling more positive than I did initially, but hoping so much the amnio results will be normal. Feel like I can face the need for surgery and a hospital stay as long as I'm confident everything will be fine afterwards.
I'm starting to feel a bit uncomfortable with all the fluid already and only 24 weeks! So not looking forward to the remainder particularly!
Thanks for sharing your experience and hope you're all settling in together to life at home Where do you live out of interest? We're in Glasgow and I know the QEUH does all the care for Scotland for duodenal atresia so was just wondering if it is the same team.

It's lovely to have him at home at last.

I didn't know about his condition til I was 34 weeks. I had wondered why I felt fit to explode so early on - the fluid explained that I suppose! Is this one your first? We also have an older DS so we couldn't really stay in hospital with DS2. I think there are positives and negatives to both.
Our team was in the JR in Oxford - we are about an hour away from there. They were all absolutely fantastic. Do you know when you will get your amnio results?

No I have a little girl already who is 2.5 years...so hectic for us too! Thankfully the children's hospital in Glasgow is only 30mins drive. Amnio results (the trisomies anyway) on Thursday this week x

Oh yes, you will have your hands full! Good that you're not too far away from the hospital at least. Good luck for Thursday - I remember how worrying that wait is, but I think it's significant that your 12 week scan showed you as low risk. Let us know how you get on! x

Thankfully good news from the amnio results so far

Excellent news, Natty- I was thinking of you!