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Original poster

Possible bowels outside of baby

32 replies

jennys9221 · 09/09/2023 19:22

I had my 12 week scan on Thursday and everything was looking great, until the sonographer told us that she was referring us to fetal medicine as she was concerned about how the ‘cord insertion’ to the baby was looking and said it could indicate that part of the bowels are forming outside the body and that the stomach hadn’t fully closed.

We did the combined screening test and just waiting for the bloods to come back from that. She said if it is the bowels, it can sometimes be linked to chromosomal abnormalities.

Been totally devastated ever since. I go to fetal medicine on Tuesday but that just feels like forever away!

has anyone else had this? I’ve read stories of it rectifying itself in later weeks. I was just 12 weeks+1 at scan.

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Ivebeentogeorgia · 09/09/2023 19:28

Not experienced it myself but know someone whose baby was born with his intestines outside of his stomach. He had to have surgery at a few days old. He’s about 4 now and thriving- I think he’s had a few gastro issues but nothing major and is otherwise happy and healthy having just started reception.

Beamur · 09/09/2023 19:29

Happened to a friend of mine - baby needed surgery at birth but is now a happy 3 year old child.
It's scary, but find out from the doctors exactly what's going on.

ArabianGulf2Surrey · 09/09/2023 19:32

We had that in our first pregnancy, as PP said with some luck it will just be a little surgery after birth and then all will be good.

If in any way possible I advise you to see Dr kypros Nikolaides in London, the only doctor I would trust in such a situation.

Hope all goes well xx

LeopardLover · 10/09/2023 09:05

This happened to me a few weeks ago, I knew I was exactly 11 weeks but they put me a week ahead. I had gone down the rabbit hole and was concerned it was linked to Edward's. After a scan 4 days later it has resolved itself.

Do you know your exact dates? I had just been scanned a bit early. Most posts online say it resolves by 13 weeks.

Sending you so much love and hoping for the best!

P.S I saw a bunch of people saying similar to what was shared here, it can be a standalone issue that's resolved after birth via surgery.

Original poster
jennys9221 · 10/09/2023 11:53

Oh that’s reassuring to hear, I’m so happy for you that it all worked out ok! I had a previous scan so was fairly sure of dates. When I had this one I was 12 weeks 1 days. Keeping everything crossed for a positive outcome too

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FortyFacedFuckers · 10/09/2023 11:58

Yes as PP's have said my friends DD was born with this, she had surgery a few days later & is now a happy & health 12 year old who has had absolutely no health concerns ever since.

SouthwestSis · 10/09/2023 12:25

If baby is born with this condition then you will have to deliver in a hospital that does neonatal surgery so something to consider. Wishing you best of luck on Tuesday

IHeartGeneHunt · 10/09/2023 12:29

My daughter had it at 12 weeks, it resolved itself before 16 weeks.

I know a man who was born with everything outside, he's perfectly healthy and in his 50s!

LeopardLover · 10/09/2023 13:54

@IHeartGeneHunt That's really good news!

We'll all be thinking of you on Tuesday OP xx

Original poster
jennys9221 · 10/09/2023 14:40

That’s really great news! I’ve read lots of similar stories. The sonographer was so vague with us, she couldn’t see exactly but just said the cord was showing as a brighter white than usual which may indicate something like the bowels being outside. Been driving myself crazy!

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KentuckyFriedChickenAndAPizzaHut · 10/09/2023 20:13

A girl at my school had this when she was born - she was perfectly healthy, just had a long scar instead of a belly button!

I believe this is amongst the most minor of the defects they are looking for. When baby is born, they basically just stuff the organs back in and sew them back up - job done!

Original poster
jennys9221 · 12/09/2023 21:39

Just to add an update - they have confirmed baby has a “small Exomphalos” containing just the bowels. We had a CVS test to hopefully rule out chromosomal abnormalities (original screenings were low risk). There’s a chance it could resolve and bowels go into place on their own, but if not baby will need a procedure once born. Not the best news, but at least it’s a solid answer once we get cvs results back 🤞🏼

OP posts:
Justhereforaibu1 · 12/09/2023 21:45

Hoping your test results are positive. Look after yourself, cvs is horrible x

MrsPerfect12 · 12/09/2023 21:52

Wishing you good news when the results come back. 💐

ASGIRC · 12/09/2023 23:30

Happened to friends, Baby had surgery when she was born and is now a happy, healthy 5 year old!

GrumpyPanda · 12/09/2023 23:48

A friend's DD was born with something like this, had months of surgeries as a newborn. Some issues in primary school, such as adverse reactions to junk food. Now a happy and by al indications successful.adult.

Totaly · 12/09/2023 23:53

If in any way possible I advise you to see Dr kypros Nikolaides in London, the only doctor I would trust in such a situation

Out of 63,000 surgeons in the UK? That’s impressive, assume you know them all?

This sort or rubbish is misleading.

OP I hope your child is ok. Parenting is about over coming these hurdles and you’ll be stronger when it’s all sorted.

Fingers crossed it’s minor and easily rectified.

ManchesterLu · 13/09/2023 00:00

I know it's scary, but I know a couple who've recently had a baby born this way. He had surgery very early, and he's absolutely thriving now. Don't worry about it. Doctors can do bloody amazing things.

LeopardLover · 13/09/2023 00:08

Really hope your CVS comes back clear! We'll be thinking of you x

ArabianGulf2Surrey · 13/09/2023 03:02

@totaly look up Dr nicolaides, he is the leading expert in the field worldwide, not just any doctor. We flew to the UK just to see him. But I'm sure you are speaking of personal experience having a baby with exomphalos...

At OP, please do take this seriously. While I do hope that in your case it can be resolved easily with only minor surgeries after birth, there is a reason you only here positive stories, as soon as its a bit more complicated, unfortunately, babies chances of survival are less and usually termination of pregnancy is the recommended course of action.

Feel free to PM me with any questions you might have xx

LoonyLois · 13/09/2023 03:08

Hope the CVS comes back clear OP

Original poster
jennys9221 · 13/09/2023 07:27

@ArabianGulf2Surrey Of course I am being realistic about it, why else would I have put myself through a cvs test? Whilst I appreciate it sounds like you have also been through this, you were not in the room when we had these conversations with our very qualified doctors who deal with multiple cases of this every year.

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Original poster
jennys9221 · 13/09/2023 07:29

Thank you all for the kind messages. Feeling pretty sore after the cvs, but know it was the best thing to do for baby. Going to try and stay busy for the next days whilst waiting for results ♥️

OP posts:
Original poster
jennys9221 · 01/10/2023 08:04

To update this thread as in my intense googling/searching I followed so many stories and wished I knew the outcomes.

The first rapid part of CVS results were clear of the main abnormalities and we discovered baby was a boy. We had an almost happy couple of weeks believing all was ok, until a call from a geneticist informed us that the detailed result showed “significant and complicated” rare chromosomal abnormalities, which has been caused by an error in cell division in the very early stages. This combined with the fetal medicine scan of other defects has led us to the decision of tfmr, which we are having this week.

Heartbroken and not really sure how to navigate all of this, but know the decision will prevent our baby boy from suffering and pain

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Callmemummynotmaaa · 01/10/2023 08:56

Oh OP, I’m so sorry. Thats impossible news to hear and hold. Sending massive hugs. Hope you can access kindness and support to help you get through the next few weeks and months. Xx