Exomphalos in 11 week scan - anyone else had the same experience?

[Gangle]

I had my first scan on Tuesday at 11 weeks 5 days. Everything looked normal apart from what the sonographer called psysiological exomphalosis. She said not to worry at all and this is relatively common in an early scan and that she is sure it will be cleared up when they re-scan me on Tuesday. I'm trying not to panic but really upset and worried that by Tuesday it won't have gone. Apparently if it's still there by 13 weeks it can signify other problems, genetic or otherwise. Has anyone else experienced the same thing in an early scan and did it turn out ok?

Bumping this for you Gangle.

I don't have personal experience but whilst dd was in PICU as a baby there were two babies who came in with exomphalos. Both had repairs and uneventful recoverys. I believe it occurs with other problems in about 30% of cases.

Sorry that you have this worry - hope someone more knowledgeable comes along soon.

thanks so much. I am praying that there was other people on here with the same experience which will support what the sonographer is telling me, i.e that this is quite common and a normal part of development but that the stomach wall should be closed by 12-13 weeks.

Hi Gangle, what a worry for you, I suppose you've googled exomphalos and looked at the worst case scenario.

Exomphalos can be present without any other abnormality, and in itself can be corrected by surgery.

As you now are aware, it can also be associated with genetic problems, if that is the diagnosis, nothing can be done to change that.

Although obviously aware , I never came across a baby with this condition in my experience as a midwife, but a colleague's son was unexpectedly born with the condition some years ago, following surgery he has been absolutely fine.

Don't know if this helps, but didn't want your post to go unanswered.

I hope things go well with your next scan.

thanks NoName. The sonographer was completly confident that it was would "in" by next week when I will 12.5. Should I be reassured by this do you think? Presumably she wouldn't say that unless she was pretty sure.

Hi gangle.

The sonographer sounds very sensible and yes, I do think you should be reassured by her comments.

It's difficult when they find a 'potential' problem, they have to advise you of the findings and you are left looking for answers which aren't necessarily available at the time!

Even a few days wait can seem a lifetime when you'e pregnant.

I hope all is well at your next scan.

I had exomphalos at exactly the same stage as you - 11 weeks and 5 days. Was extremely worried, although the sonographer tried to reassure me, just like you. Went back a week later and all was absolutely fine. My 'baby' is now 5 and totally normal. Try not to worry!

omg, Oodle, thank you so much. So relieved that yours turned out ok and praying mine will. They tell you it's common but few other seems to have experienced it. Did yours really close up in a week?

Hi Gangle,
We went through a similar experience, although unfortunately somewhere with less sensible sonographers and consultants than you seem to have had.

At our 12 week scan (when from my openly sketchy dates they had me at 13+4 weeks) the sonographer diagnosed both an exomphalos and 'significant' nuchal thickening. We were referred to a consultant who said the combination made it seem likely that our baby had a condition called Edwards syndrome, which has a 'not compatible with life' prognosis and who offered us a termination on the spot...

Bear with me... it gets better, honest!

Unsurprising we requested a second opinion before even considering such a drastic step, and were referred to the fetal medicine unit a different hospital 3 days later (worst 3 days of my life, so I know what you're feeling...)

First thing they did was take measurements to accurately date the baby (which you'd imagine would be done at the 12 week 'dating' scan I'd just had, but no...) and from those measurements and further quizzing as to my cycle length decided that I was, in fact only 11+6 weeks.

The dating, he said, was especially pertinent, since at 11+6 what he termed an 'umbilical hernia' was nothing unusual, since babies begin to develop some of their organs in the base of the umbilical cord, and they gradually work their way in. However, if they hadn't checked my dates and assumed I was nearly 14 weeks, then yes, that wold possibly have been cause for concern. He also said that he 'couldn't see' a significant herniation at this point, and the problems may well have fixed itself.

However, our nuchal thickening was still a cause for concern, (the measurements gave us Downs risk of 1:50) so he recommended a CVS (like an amnio, except they take placental tissue rather than fluid, and they can do it a lot earlier). He cautioned us that it did have a risk of miscarriage, but after what we'd been through for the previous few days, we needed to KNOW what we were dealing with for the sake of our sanity.

The procedure was absolutely fine, and we got the results within a week for the 3 'big' chromosomal abnormalities (downs, edwards and pataus) and a whole lot more after 2 weeks, all of which came back normal.

They had us back again at 15 weeks to 'double check' the exomphalos and again, all was fine. I'm expecting an apparently healthy and very wriggly baby girl in 4 weeks...

In short, the first hospital scared us silly, but, had they explained the situatio properly, as yours seem to have done, and our subsequent consultant did (LOVE you, Homerton FMU xxx) they could have saved us a lot of anxiety...

Try not to worry... I know it's hard, but as they siad, it's an issue which often resolves itself in time, as just a part of normal fetal development. You can also be reassured that they didn't pick up any other 'soft' markers for genetic problems (such as an increased nuchal fold measurement as in our case) - all this is good. It's also worth bearing in mind how rare this condition is - the odds that all is fine are overwhelmingly in your favour.

Even if it it still there later on, it's a problem which has a huge range of severity, and is eminently fixable even at its most extreme. I found this website ? www.geeps.co.uk - a support site for families of children with this condition, extremely helpful... the children here are beautiful, and most have come through the experience just fine - the only long-lasting reminder being a 'unique' belly button! Have a look at the 'experiences' section.

Really hope all turns out well for you too... It's a terribly anxious time, and I feel for you... Keep positive and take care of yourself in the meantime...

... and let us know how you get on at your next scan?

BIG HUG

DB
xx

DB, I almost cried whilst reading your post. Thank you for taking the time to desribe your experience - I am SO glad that all has turned out well for you after what must have been an incredibly emotional time and can only hope that I'm as fortunate. I feel so much more positive from reading yours and Oogle's posts and will go into the scan on Tuesday marginally less terrified although nothing will convince me until I see the scan myself and the sonographer says all is well. You've made the next few days much more bearable though. There is so little on the internet or in any of the pregnancy books I have on this and what there is is terrifying. Thank god for mumsnet! I just hope if anyone goes through this in futre they find this chain. I will keep you posted as to how the scan goes but keeping everything crossed. So ironic that I went from feeling slightly ambivalent about the pregnancy to deperately wanting this baby more than anything - possibly from seeing the scan or possibly from knowing something could threaten it. Whatever happens it has made me so much more appreciative and aware of what a blessing a healthy baby would be.

Hi Gangle,
Really hope it all works ot for you guys... it's such a difficult time. And yes, the stuff on the internet is bloody terrifying - so steer clear of Google over the nex tfew days... .

Your sonographer seems relatively confident all will be OK - I think that's a really ggod thing especially as the medical profession seem to err on the side of 'worst case scenario' - just in case they get sued, I suppose.

I too, was having mixed feelings about being pregnant at the time... I guess the (only?) silver lining in this kind of scenario is the rapid perspective re-alignment it gives - all those other worries seem so insignificant, you know?

BIG HUG (again, but you probably need as many as you can get...)

DB
xx

Is all OK Gangle? Been thinking about you since I read this the other day.
Had nothing to add as have no experience but I've had my own worries so I know how horrible it is.
Really hope you and your little one are OK.
x

Hi Gangle,finally found this thread (!) and hope you can give us an update. Fingers crossed they might have been able to say all ok, but might be another week or so. Can't be too precise as scans at this stage are give or take 5 days (little beans don't grow x mm each day, sometimes nothing for days then wham!so scans can't be that accurate)
Please let us know how you're doing so we can try and help.
Hugs
mumofk

Ditto, Gangle...
Really hope all is OK - thinking about you a lot today and yesterday...

DB
xx

Really hope you are OK Gangle.
Thinking of you
x

Hi Gangle,

My daughter is one of those featured on the Geeps site mentioned by Designerbaby earlier. I really, really hope that your scans have gone well, but I just wanted to say that if you need support from Geeps you will get it. There is also support for gastroschisis.

I hope that this worry will be over for you very soon.

Patsy x

Bumping this just in case you're there, Gangle... hoping all is well.

DB
xx

Hi everyone. Had scans on Tuesday and hugely relieved to report back that all is fine and the exomphalos has gone, as if by magic! Was still nerve wracking though as the NHS scan in the morning (at Queen Charlotte's in London) was far from clear as the baby was laying right in my pelvis and the quality of the image was pretty poor (old machine?)(we ended up doing a trans vaginal scan as well to get a better look) plus the sonographer wasn't particularly reassuring so wasn't really convinced until the scan in the afternoon (at the fetal medicine centre) confirmed that all was well. So, so far so good but this experience has alerted me to how much can go wrong so of course I'm now getting myself nicely worked up for the 20 week scan!! Thanks so much for all your support - don't know what i would have done without mumset.
Gangle. xxx

That's fantastic news, Gangle. I am sorry that you had to go through such a trauma.

As mentioned last week, every foetus has a kind of temporary exomphalos around this stage (something that very few poeple realise - I certainly didn't!) and it's just a very unlucky few like my daughter who - for reasons unknown -don't get their bits and bobs back in. I had a few extra weeks of blissful ignorance about my daughter's problem because the scan I had at ten weeks was such poor quality.

I wish you the best of luck with the rest of your pregnancy.

Patsy x

Hi Gangle,
That's brilliant news - really glad that it's all worked out for you, but sorry you had to go through all that worry...

Don't worry about the 20 week scan, since your little one has already been looked at lots, you've got more reason than most to be optimistic that everything is absolutely fine.

Go enjoy the rest of your pregnancy, and look forward to 20 weeks when you get to say 'hi' to your bubs again!

Congratulations!

DB
xx