Duodenal atresia-double bubble

[BabyB19]

I didn't have the screening for downs. Been having growth scans as baby is on small side. At yesterdays growth scan 34+5 they picked up duodenal atresia of the baby's stomach, I've been completely blindsided by this and have spent the past 24 hours researching it. Knowing there is appx 1/3 chance now of the baby being born with Down syndrome. I don't even know what I hope to gain from this post other than maybe others stories and a hand hold x

DD had a duodenal atresia. The operation (26 years ago) was pretty straightforward and she recovered quickly. She is doing really well in her life and is healthy and happy.

She also doesn't have Downs. At the nuchal scan there was a 1 in 250 chance of her having Downs against 350 background risk because of my age.

Where did you read the figures that there is a 1 in 3 risk of Downs?

Sorry I shouldn't say risk of Downs. I guess it is a 1 in 3 association with Downs.

I should have included this all in one post.

I remember before her operation reading on the survival rates after duodenal atresia operations and being scared (they were quite low) but the surgeon said that some of these were quite dated figures and also duodenal atresia is often associated with other conditions eg. heart which can affect outcomes. So, I am just saying that figures about associated conditions have to be looked at cautiously. I think the operation usually has a good outcome and the association with other conditions is just that, an association rather than a necessary link.

Hi @Horological thanks so much for the reply, i have read some much online that suggests it's around 30% of downs with the condition. Now I have calmed down a little bit I'm going to ask the consultant to give me a call to try and make things make a bit more sense x

Hello @BabyB19 My dd was diagnosed with duodenal atresia at a 34 week scan too. It was a very scary time and we were also told the condition had a 1 in 3 association with DS. We were so shocked and worried so decided we would have the amnio to know for sure. I cancelled last minute though as we were told there was a small risk the procedure can bring on early labour and I knew baby needed to be as strong as possible to face surgery at birth. So it was a tough 6 weeks waiting.

DD was born 5 days late and had surgery at 8 hours old. Although she had the proper testing for DS the consultant whispered to me straight after she was born that it doesn't look like she is. The surgery was successful, she also had her appendix removed which I believe is pretty standard when you have surgery in this area. She spent a week in hospital and was allowed home at 8 days old! We were initially told to expect her to be in for about 3 weeks but she done so well. They just like to see them feeding properly before going home.

The official test came back ok, she didn't have DS.

DD is now 16 and has had no problems since at all! She has a scar which has grown with her but sits naturally in a fold when sat down😉

I really feel for you as it so hard to be told there is something wrong with your baby, especially when you've got to this late stage thinking everything was fine. I was only offered the 34 week scan as part of a survey and they picked up the 'double bubble'. If we hadn't had it we would have been none the wiser until she was born and she would have been really poorly before they knew what was wrong with her. It would have been very frightening. At least knowing now you can be prepared. My labour didn't progress too well and she was born by forceps in theatre with 15 people in the room! We were told that we could very quickly see baby when born but that she would be worked on straight away. She had a tube put into her tummy to remove any fluids and then was taken over by ambulance to the hospital over the road where she then had her surgery. The team were fantastic and everything should be explained to you really well.

We were told in PICU that dd was definitely the 'well-est' in there. There were some very poorly children there which made us feel very sad but grateful .

Please pm me if you have any questions. We didn't really have access to the internet at the time like we do now and couldn't research the condition or reach out to others. It would have been so helpful.

Wishing you and your DB all the best 💐

Thank you so much for your reply @Rainraingoaway21
It is such a long wait to finding out isn't it. We also have the baby's size against us so are being induced at 38 weeks (on the 5th) I am beside myself with worry and anxiety. I am praying for no DS and that my little one can have a surgery to repair the stomach the same as your little one and we can go on with no further issues. You're right it is such a shock finding out at this late stage I feel so helpless. I don't think even having the amnio I would have got any peace from it anyway because I want to see with my own eyes what happens when the baby is born. I have a rescan on Tuesday and am praying they say they have made a mistake but I know I am clutching at straws x

Yes the double bubble they see on the scan is the main giveaway isn't it. If someone could have told me how quick baby was going to recover I wouldn't have had half the stress and worry. Of course every case is different but at the time I thought it was the end of the world when in reality it really was a fairly straightforward operation and she recovered quickly.

Hopefully at your scan on Tuesday they will fo lots of measurements and be able to reassure you. I was reassured that from what they could tell, her heart was normal and there were no other signs of DS. Scans are limiting but I found this very reassuring. What is the reason for inducing you at 38 weeks do you know?

I remember they did speak about inducing me but decided to let things happen naturally, a team/surgeon needed to be organised and ready but they organised this as soon as she was born regardless.

I really hope they can offer you some reassurance at your next scan.

They are inducing early due to size, my first baby was only 5lb and this one is on the same percentile, possibly my placenta being the issue hence the extra scans, nothing has ever shown up on any of the other scans and I've had tonnes and the heart etc all looks fine here too. It says on my notes it's a partial atresia so I'm holding on to that as a positive as well @Rainraingoaway21 x

Hoping everything goes OK for you op. I had a dc at 35 weeks. 5.12..

That's really good news that everything else looked good on previous scans x

Thanks @Finalcountdowntoourtripaway

I'm hoping so @Rainraingoaway21 I've also had a 4D scan at 27+ weeks and nothing was picked up on that either in terms of facial features etc. i have scanned them a thousand times since the atresia diagnosis and I really can't see any signs of DS in the face but I suppose it would be hard to tell x

Bless you, I done the same with my scan photo, ours was a 3d scan they done for us in between telling us something was wrong and the appointment giving the diganosis. I'm not sure if you could tell from the scan picture anyway? I don't know. It's not too long to wait for you now, although I know it must seem it. It spoils the last of your pregnancy doesn't it, taints the excitement. It was my first baby in my case so I knew no different.

Have they talked to you about the surgery or anything yet or will that be after Tuesday's appointment?

Although this seems the end of the world for you now, please be assured you will get through this. You are going to meet your lovely baby very soon and they will be treated and on the road to recovery. This condition is totally fixable. Nobody can say about the risk of DS, all I can say is that from my experience, with no other health problems detected, the chances are in your favour.

Do you know if you're having a boy or a girl?
x

My daughter found out at a private scan at 30 wks that her baby had duodenal atresia. She was told it can be detected from 28 wks onwards. It's a bit worrying that some things do not show up on scans earlier - maybe a later scan should be offered to everyone?

Her daughter is 2 yrs old now and completely fine.

They told her that because baby was also small there was a 40% chance of downs. The midwife gave her lots of information and dvds on Down's syndrome to prepare her. So the condition and being a small baby were two 'markers' for downs.

She had an amniocentesis straight away - this collapsed a membrane around the baby. The results eventually came back clear after an agonising wait. She also had polyhydramnios - this meant that despite having a small baby, she was measuring true to dates because of the extra fluid.

She went into labour at 34 wks 5 days. (They said this was due to polyhydramnios and not the collapsed membrane.) The baby was 3lb when born. Surgery happened the same day - there were a few complications. A main blood vessel had to be bypassed during the surgery, which hadn't been indicated on the scans. The baby had set backs after surgery, including collapsed lungs and sepsis. Her baby was in NICU for just over 5 weeks and was discharged on oxygen. During all this time her partner was not allowed to see the baby because of covid.

Baby had reflux (due to prematurity) and was a poor sleeper, she met all milestones and is now a very chatty toddler.

My daughter is expecting twins now and will have the consultant sonographer check for the condition in due course.

My daughter found out that her partner's cousin was born with this condition 40 yrs ago. He had successful surgery after initial feeding had indicated this condition - he was sick and inhaled some vomit. He has had a completely normal life so far without any complications. So even if the condition is undetected until after the birth, the outlook is still good if recognised quickly.

One thing that she noted before she had her baby was - the baby never had hiccups. Her sister told her that her babies had hiccups every day after 28wks, but her baby didn't.

How are you doing @BabyB19 ?
Did you manage to ask more at your appointment yesterday?

I hadn't heard if this. I hope your baby recovers well from the surgery.
Remember 1/3 children born with Downs means 66 in a 100 children are not.

As this condition affects 1 in 6000 pregnancies the chances of the baby then having Downs is actually very small.

Good luck. Must be very scary.

Updating for anyone who searches this in the future. I have now given birth to a perfectly healthy little girl, no Down syndrome and no atresia present on the post birth X-rays. She is amazing and we are very lucky 💓

@BabyB19 that's such wonderful news! Really pleased for you. What a lot of worry you had before. Enjoy her! 💕

Thank you @Rainraingoaway21 we are so happy and grateful 💓

Congratulations 💐

Yay, congratulations!

Hi, I’ve just seen this post and I guess I just need some support. I’m pregnant with my first child, a baby boy. We originally got sent to a specialist due to a slight umbilical vein varix (which they are monitoring and all is ok) however on our most recent scan (24 weeks) they’ve found a ‘double bubble’ and have said it could be duodenal atresia and that there is a 1/3 association of this condition to Down’s syndrome. I don’t know how to feel or what to think. We’ve had the NIPT and are waiting for the results. We opted for the 12 week testing and our risk of Down’s syndrome came back low (1 in 13,000) and I know he could be that 1 but it just doesn’t make sense. None of it makes any sense to me and I’m just so scared. Every time I feel him move I can’t help but cry, and I can’t explain it, I just don’t know what to do or how to feel

Hi @RandomA so sorry you're going through this. Are you going to be re-scanned soon to confirm whether the baby has this or not? OP was told her baby had it only to find out when born that infact all was well. Even if your baby does have duodenal atresia, please be reassured that surgery has very high success rates. My baby was allowed home at 7 days old instead of the initial 3 weeks they quoted to expect. The whole experience was nowhere near as bad as I had thought it would be. The worst part was the time when we were told, so for you right now. There's nothing worse than being told there is something wrong with your baby, I know exactly how you feel. Hopefully you will receive your NIPT results soon. Please remember approx 66% of babies with duodenal atresia do not have Downs. That is very good odds

Hi @RandomA I'm so sorry you are going through this. I know that fear all too well and there's nothing anyone can really say to make you stop worrying until you get your baby in your arms. With regard the DA, it is such a scary thought your baby having surgery but this is something that can be repaired and your baby can recover from fully. Hindsight is a crazy thing and now my little girl is here, everytime I see a little girl or boy with DS I think to myself what was I so worried about!? My friend had a little girl with DS not long after I had my baby and she is honestly the brightest happiest little girl I've ever known. So beautiful and intelligent and the only difference is that she has hit milestones slightly later than average. She smiles from ear to ear all day long and I would be proud to have her as my daughter. You will love your baby whatever the outcome. The fear you have atm stole any enjoyment from my pregnancy and now she is here and perfectly well I hate that I let it take over me the way it did. I saw the double bubble with my own eyes on the scan when I was pregnant and then when she was born there wasn't a thing wrong with her so please try to stay positive xxx