omphalocele

[honeybunsleo]

Hi,
Has anybodys baby been diagnosed with omphalocele.

15 weeks today and had my first fetal medicine appointment, we got the scary news our little one has omphalocele. Although my blood chromosome tests came back good the consultant recommended a cvs test, which we had today.... it was horrible. Baby on the scan measured fine, no other abnormalities.
Just wondered if anyone has had a similar experience?

I'm Scared :(

Hi,

I can understand how scared you must be. My DS was diagnosed with omphalocele and I was terrified. He has just turned 13. Completely healthy. You would never know. Providing no other abnormalities prognosis should be very good.

Thank you, cvs test came back all clear. We have a eco on babies heart on Thursday so fingers crossed but so far is looking positive. Thanks for the reply xxx

That's great news. Very best of luck for Thursday.

Hey, we’ve just come back from our fetal medicine scan/appointment. Just been given the news that our baby has a medium omphalocele, we’ve got a amnio test in the next 2 weeks to check if there’s any chromosomal issues. We had a NIPT test for the 3 big ones and they came back negative. Really really hoping there’s no other chromosomal problems as I’ve read 90% of omphaloceles sort themselves out by week 20!!!

If you don’t mind - how has the rest of your pregnancy gone since this post?

Thanks

Hi,
i had my 12 week scan yesterday. Baby measured 12+5. We was told baby has omphalocele and we have been referred to a fetal specialist for another scan and CVS tomorrow. Please can anyone advise what week they were informed about the size of the Omphalocele as if my results come back normal from the CVS, id like to know the size. Are most minor or major? I can’t find many stats to support. Also can heart issues be detected by the CVS or just by scans / echo’s? And if that’s the case, is it just a waiting game throughout the pregnancy?
Thank you X

Hi ladies
Honestly it's really lovely to hear some people going through the same and I hope I can maybe offer you some comfort and take away from worries you may have, and we can share our stories together and support one another! There are some really good Facebook groups out there too with ladies who have children out the other side living life just like any other child.

I have done so much research ect since my little girl having her diagnosis, I am now 26 weeks pregnant. I had a cvs test done at 15 weeks and as part of that I had beckwith testing done too. Which unfortunately did come back inconclusive, so if my little girl has that or not we don't know. However it's really not as scary as it sounds and I have spoken to a genetics consultant in depth who also said it is not as scary as it sounds.
We have had two major heart scans done by consultants both found no abnormalities.
One first find with fetal medicine baby had bowel and liver, now it's just bowel. It's of medium size. I have another scan on Wednesday and then on the 5th June I have a appointment with the full surgical team who will talk us through everything. They encourage to have a vaginal birth if the baby is measuring a size that will
Make that possible. At the moment she has a large tummy but I also have type 1 diabetes so that's common.

They told us the size at the first fetal med scan which was around 15 weeks they did the cvs tests and everything then too. They can't do the proper heart scan until around 18 weeks but did tell us on our first appointment the heart looked as it should for the gestation. Things can migrate in and out of the sack so ours started with liver and bowel and now is just bowel, however has not changed size throughout.

Apart from everything else I've written the only difference with this pregnancy is I have been in a lot of pain with Spd and three other women I have been speaking too whos babies have it also have the same problem. There have been lots of a appointments compared to my last pregnancy, but they are quite welcome because you get to see your baby so much! We were so scared in the beginning, I really didn't know what to expect or how it would go but honestly I'm
Feeling confident. These kids are warriors! My little girl is so strong honestly when she kicks it's so strong! And they check for everything they use 4d scans they check everything you could imagine.