Baby with omphalocele

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Bright Star Posts: 756
Hi all, It's been somewhat 4 years since I have been on WOL, So feeling a bit rusty when it comes to posting on the forums, please bare with me! I am currently 17 and half weeks pg and at 3 mth scan it was confirmed that our baby had quite a large omphalocele ( where some or all of the intestinal organs form on the outside of the body) It has been a very tough 4 weeks to say the least. We have been in and out of hos every week for 'reassurance scans'. This defect has a very high % connection to Down's syndrome, but we have had an amino and the tests confirm that there is no chromosomal defects I guess what I'm hoping for here, is if there is any other family out there who have been or are currently in his situation, I would love to hear your thoughts Although we have been told that in Ire it is a rare enough occurrence. Any comments would be much appreciated Many thanks
mrspiggy Posts: 1289
Don't have any experience apart from seeing it on an episode of one born every minute a couple of years ago where the outcome was good. Sending you lots of hugs and hope it all works out for you.
LeonardandPenny Posts: 2684
I don't have any experience of this but have you tried any of the other forums like Rollercoaster or magic mum. I wish you any your precious baby the very best, hope all goes well.
Downton Posts: 314
I don't have any personal experience with this but my friends sisters baby was born with this and after a few operations she is perfect, I'm sure with the proper medical attention your lo will be fine too, wishing you all the best of luck, it's hard to hear something like that during your pregnancy but stay positive as it will work out fine I'm sure, lots of love xxx
tilsun Posts: 4506
You poor thing, what a worrying time. The special needs and longterm illness sections of rollercoaster and magicmum are very active. Rollercoaster also has a pregnancies in difficulty section which may have parents who have had similar exerienes. My daughter ha s down syndrome and I know down syndrome ireland have a specialised nurse who works with them. Even though your lo does not have down syndrome, the nurse may have experience of this or be able to put you in touch with families who have been there. Wishing you all the best.
LoveActually Posts: 106
Bright Star Posts: 756
Many thanks ladies for your comments and replies I have now registered with magic mum and rollercoaster I'm just living each day as it comes and praying that I will make full term and that my little DS will survive whatever op's he needs, I have read a lot of postive stories about this condition albeit mainly on cases in the US. I am going to try and stay strong and hope god will be good to me xxx
anya Posts: 187
Hi Bright Star I am a paediatric nurse in one of the childrens hospitals in Dublin, it is a rare condition but we probably see 1 - 2 every year or so , some years more than others. To reassure you the omphalocele itself is very treatable, it does depend how large it is on what treatment is required. In fact some require no surgery at all, even some of the medium ones. Also even if surgery is required it doesnt always have to be done immediately it can be months later, it all depends on different variables. I hope that is somewhat reassuring, feel free to PM me if you want to ask any other questions etc..
Moodles Posts: 547
My niece has one. She is nearly 4 and is perfect in every other way and as bright as a button. They are waiting on her to get bigger and stronger before they operate. Parents thought it would be operated and fixed straight after birth but dr keep pushing it back. Same as you it was picked up on an early scan and parents were told this could be wrong and all types of disabilities but as time went on all tests came back clear. Her mother is hoping she'll have the operation soon before she starts school.
shellbellxxx Posts: 133
My ds was born with one. Pm me if you want to know more xx