Babies with organs growing outside their bodies

[cathshuck]

Hi my friend had her twleve week scan this week and was told the baby has its bowel growing outside its tummy. Understandably she is worried sick. Has anyone been through this or got any advice I can pass on? Thanks

i have only seen on programmes what they do. i am sure someone will know more. from my understanding they bag/wrap organ and its suspended above body to kind of go back in itself iykwim? thats an american prog though so i maybe well in wrong area.....

I think this is operable and nothing to be too concerned about.

obviously a op will follow. positive vibes to your friend

Geeps may help

if I remember correctly, this is called exomphollis (spelling probably way off though) and they deal with it in one of two ways, either the wrap the bowel and when the swelling goes down it goes back into the cavity, or alternatively they will operate to put the bowel back into the correct place.

have no doubt that she will be monitored carefully throughout her pregnancy though, and once baby is born he/she will be taken to scbu to be looked after.

have no personal experience though - just what i've seen on tv

I saw this on a baby show once, looked horrifying but everything was ok. Like pp says, they kind of hung the organ up like a drip over the baby and let gravity feed it back down inside, then seal up the hole. Amazing stuff.

I read something saying that it's becoming more common (not that it's at all common)as it can happen by chance but also as a result of some types of drug use during pregnancy - cocaine I think I remember - so if they're asking your friend any wierd questions, that might be why.

NB she might want to prepare herself for a caeasarian for obvious reasons. But this is very treatable.

cathshuck - is she spot on with her date? It can resolve itself at around 13 weeks.....there was someone on her a while ago who had a scan at around 11 weeks and thena clear scan a couple of weeks later.

Otherwise, whilst I have no personal experience, dd spent many weeks in PICU and there were a few children who came in with exomphalos and all of them were treated successfully.

my friend little girl was born with this shes now 6 and in great health. she had to have two operationss to place all the bowel inside of her tummy but as i said shes was fine like a happy ,normal, healthy little girl all the best for your friend.

Cathshuck, I was scanned at 11.2 days and the baby had "pysiological exomphalos", i.e. its intestine was out the outside. The sonographer didn't seem too concerned and said that herniation of the gut was a normal process that takes place between 8 and 12 weeks gestation and asked us to come back a week later for another scan. Naturally, we worried ourselves sick googling exomphalos but returned a week later and, miraculously, it had gone! How far along is your friend as the dates are crucial - the stomach wall should close by 14 weeks at the latest (we found that different websites said different things, some said earlier, some later but I think 14 was generally the latest) so if your friend is only 12 weeks then there is a good chance it will close in its own time. If it is exomphalos then it seems that it can either be just that in which case it is treatable or it could indicate more seriousl genetic problems. Will keep everything crossed for your friend. Let us know how it goes. x

my friend had this, and was born by c-section, she is now heading for thirty and except for some elaborate embroidery scars on her abdomen she is fine. i am sure that things have come a long way in 30 years too as far as treatment goes. basically all that should have been inside was wrapped in some sort of cling-film type stuff, and she had her operation to put it into its rightful place a few days after birth.

Thanks everyone she was told it could close itself up but I have passed all the advice and info on. She is starting to let herself get excited after the initial shock. Thanks again everyone and have a great christmas. XX

It's called gastroscesis. I'm 20 weeks and have just found out that baby has this condition. No doubt it'll be a hard time in your friends life right now. The only suggestion coming from someone who is going through it, support, the best thing is always support. There is absolutely nothing that she nor her partner did wrong, and there is nothing that she could have done to have this happen. 1 in 4000 babies have this condition and from what i understand it's just the skin that didnn't meet up where it's supposed to which leaves a hole. It is fixable, and the good news is 90% of babies make it through this. Just keep reminding her that she has to be strong, for herself and for the baby.

Hi Cathshuck,

I hope that your friend has had good news and that the baby's bowel has gone back in. My DD2 was born with exomphalos - gastroschisis and exomphalos are 'linked' conditions. With exomphalos the organs are contained in a sac and with gastroschisis the organs are loose.

If the condition is ongoing then please do ask her to come and take a look at Geeps as Tissy suggested above. She'll get a lot of information and support there. (Eterio, are you a member yet?)

Anyway, I very much hope that she won't need Geeps and can relax and enjoy the rest of her pregnancy.

Patsy

I had siui (stimulated intrauterine insemination) as I could not get pregnant due to endometriosis. At my 15 week pregnancy scan my daughter was found to have an abdominal abnormality. The exact problem was unclear at the time and I had repeated scans over the next few weeks. An MRI scan showed that my baby's bowel was on the outside (a condition known as exomphalos). I was advised to have a cvs test as there was a 67 per cent chance of chromosome abnormality. I was also sent to another city for an urgent heart scan on the baby as the medical staff thought her heart was the wrong way round. Despite all the worry, the CVS test showed normal chromosomes. The heart turned out to be the right way round. At 20 weeks gestation I met the surgeon who told me that she would have an operation to repair this on the day she was born and that she may be in hospital for several months. I had a caesarian section six weeks early due to pre-eclampsia. My baby was taken to the nearby children's hospital and her bowel was put back into her abdomen. She was tube fed for a week, then bottle fed for three weeks with breast milk which I had expressed. After four weeks in hospital she was discharged home and I commenced breast feeding directly with no problems at all. She is now a lovely 7 year old girl and her only problem is that she has no belly button! (I don't see this as a problem as she won't be able to have it pierced as a teenager!) Despite all the worst case information being given to me everything went well. I have since added a lovely little boy to my family. He is now 15 months old and was conceived by IVF on the first attempt.

I had siui (stimulated intrauterine insemination) as I could not get pregnant due to endometriosis. At my 15 week pregnancy scan my daughter was found to have an abdominal abnormality. The exact problem was unclear at the time and I had repeated scans over the next few weeks. An MRI scan showed that my baby's bowel was on the outside (a condition known as exomphalos). I was advised to have a cvs test as there was a 67 per cent chance of chromosome abnormality. I was also sent to another city for an urgent heart scan on the baby as the medical staff thought her heart was the wrong way round. Despite all the worry, the CVS test showed normal chromosomes. The heart turned out to be the right way round. At 20 weeks gestation I met the surgeon who told me that she would have an operation to repair this on the day she was born and that she may be in hospital for several months. I had a caesarian section six weeks early due to pre-eclampsia. My baby was taken to the nearby children's hospital and her bowel was put back into her abdomen. She was tube fed for a week, then bottle fed for three weeks with breast milk which I had expressed. After four weeks in hospital she was discharged home and I commenced breast feeding directly with no problems at all. She is now a lovely 7 year old girl and her only problem is that she has no belly button! (I don't see this as a problem as she won't be able to have it pierced as a teenager!) Despite all the worst case information being given to me everything went well. I have since added a lovely little boy to my family. He is now 15 months old and was conceived by IVF on the first attempt.