Amnio at 35 weeks

[Primulas]

Can anybody offer any reassurance or a handhold on our situation? We had a scan last week which showed some dilation in baby's bowel. Went for a second opinion and doctor confirmed this to be the case. Apparently Down Syndrome could cause this and they want me to go for an amnio to rule it out (or in). It could also be caused by Cystic Fibrosis although the 'most likely' is that it is just one of those things. I will be 35 weeks next week, so at least the amnio could 'only' cause early labour rather than miscarriage, but I am absolutely terrified of the procedure and of the result. We didn't have the screening at 12 weeks because I wouldn't have had an amnio then because of the risk of miscarriage and didn't feel that we could afford the Harmony or similar. Anomaly scan at 20 weeks was normal and scan last week showed no other markers. Baby is measuring large. Has anybody else been through anything like this? I'm feeling quite desperate at this late stage .

[Ikeameatballs]

It's completely up to you, don't feel pressured into a test you seem uncertain about just because it's been offered/available.

How do you anticipate you would deal with a positive result, would you terminate at this stage? Would knowing now be easier than knowing in 5 weeks?

[Primulas]

Thanks for replying Ikea. I think I would rather know now than in 5 weeks because I might have come to terms with it better by then. I don't think we could terminate. I feel him wriggling so much And of course it might be fine and then I'll have had only one week of worry rather than 5. Also, apparently it might affect how they treat the bowel issue, particularly if it were Edward's or Patau Syndrome where baby may well not survive .

[umberellaonesie]

My middle child has CF we didn't find out til after was born.
But when I had my youngest I had lots of extra scans specifically checking the bowel I case he showed any signs of CF on his bowel. We had no other antenatal testing.
Have the doctors said why they wish too the amino rather than wait 5 weeks and see once baby is here?

[umberellaonesie]

Ahh cross post.
I see i would have the amino then.
I can give you lots of reassurance from the CF Point of view my son is now 12 and takes his illness in his stride. He has had periods illness but generally keeps well a.d his early diagnosis and subsequent treatment definitely have played s huge part in that

[Primulas]

Have the doctors said why they wish too the amino rather than wait 5 weeks and see once baby is here?

I think it is only because it will help them plan treatment for the bowel problem accordingly, though I must confess I don't really understand how it would differ. I think doctors like to know these things, don't they? I think I do want to know in advance too, but I'm struggling a bit with it this week.

[Primulas]

Thanks Umberella, cross post from me too! And thank you for the reassurance. All the possibilities seem rather overwhelming at the moment, so it's good to hear something positive.

[Devilishpyjamas]

Unless you would be planning to terminate the pregnancy an amnio at this stage seems extreme. Would being induced to avoid a weekend be another way to manage a potential bowel problem (& surely the amino won't confirm or rule out a bowel problem - it will just allow you to check chromosomes and run specific genetic tests? That's not the same as diagnosing or ruling out a bowel problem).

[Primulas]

Hi Devilish, not the amnio won't say anything about the bowel problem. The doctors are adamant that the bowel problem is there and will almost certainly require surgery. What they are worried about is whether there is anything causing it e.g. DS or CS.

[3littlebadgers]

Op I have nothing useful to say but wishing you lots of luck and hoping everything goes well for you and your tiny boy

[beansbananas]

I'm so sorry you are in this situation. I had an amnio last year at 14 weeks, so can empathise with your situation. The procedure itself is uncomfortable but not painful, and is over pretty quickly. I had some cramping pains afterwards, but otherwise felt fine. I'm not sure how it changes when you are so far along in the pregnancy, but based on my experience I thought it might be helpful to offer some reassurance that it's not as bad as you might think. In our case we had already had the harmony, so the amnio was done to confirm 100 % that our little one had Down syndrome. It was a very difficult time and I hope you are not waiting too long for the results. Stay strong, you will get through this.

[Devilishpyjamas]

Hmm- to be honest I'd be inclined to wait. It seems very invasive just to find that out. I know it's hard waiting to see if there's anything wrong with your child (I had to do it for about 2 years with ds3) - but unless you have a clear action you would take with the knowledge I think I'd be inclined to wait. Ds2 was only born two week early (so supposedly at term) and he had all sorts of problems for the first 6 weeks related to that,

I think the rIsk-benefits are a bit different if you would take a certain action with the results.

[umberellaonesie]

The surgery for echogenic bowel is invasive and will require a lengthy hospital stay.
If I was you I would research the surgery, recovery time, Complications etc. Ask the surgeons questions, visit the nice. So you are prepared as that is the first thing you will have to deal with regardless of which syndrome or genetic illness has caused it.
If I was in your shoes I wouldn't have the amino I would wait but I would prepare myself and arm myself with information about the surgery.
Then once that bit is done I could think about the future with my child and their. CF, or Downs syndrome or whatever.
Good luck.
What ever you decide will be the right decision.
Xx

[slithytove]

I think from the other tests you have had there is only a small chance of your baby having a condition as you have described, as opposed to the bowel issue being a one off.

In terms of your mental health and doctors preparing, I would go for the amnio. I'm sorry you are going through this, pregnancy is so hard

[slithytove]

Also, I don't know if this is your first baby or not, but not knowing could affect the birth process for you in terms of stress etc. The less stressed you are in labour the better.

[Primulas]

Thank you all for your thoughts and your kind words. Yes, we definitely need to know more about the surgery too. As I said, they don't seem to see an outcome where he won't need the surgery, which is a huge thing in itself, and this will almost certainly necessitate a change of birth hospital at this stage, as the one I was going to does not have the facilities to deal with the bowel problem. We will definitely be doing a lot of liaising now with the new hospital and meeting the surgeons, having a look around etc. so we can prepare for that side of things too. My current thinking is still I think that I will go for the amnio because I do suffer from anxiety and I deal with things better when I am prepared so I think the clearer the picture of everything little one will be dealing with the better, but I do hope that, as the bowel issue is the only one which has shown up at all so far, that maybe that will be 'all' (though obviously still a massive thing for the poor little one).

[Littlebelina]

I had an amnio at 22wks after diagnosis of a chd. We had the harmony earlier in pregnancy so knew a trisomy was unlikely but wanted to rule out other chromosome disorders that could affect how the baby responds to surgery after birth. It came back all clear, we had had mild echogenic bowel and smaller than expected growth as well so was really worried.

For me the procedure itself wasn't too bad, I was more worried about the thought of it (luckily we didn't wait long). I had some cramps when the needle I went in, mild period like but was ok after that. If I ever needed one again the procedure itself wouldn't worry me. If I was in your situation I would go for it, the risks at your stage are very low and it means you won't have waiting for a diagnosis hanging over you after birth if the baby does need surgery. The results for trisomies usually come back within 3 days and the full array in about 2wks.

[imjessie]

It could be a myriad of genetic issues that call it and some may not even show up on the amnio . You should be aware of that before you put yourself through the amnio . If you wouldn't abort I really would just wait .

[Hazlulu]

Hi Primulas,

I'm currently 27 weeks and our 20 week anomaly scan picked up unusual fluid after the stomach. We were referred to fetal medicine where a detailed scan confirmed dilated loops of the bowel. We were also taken through the possible reasons why the loops may have formed (DS, CF etc.) and offered an amnio. We decided to pursue the amnio and I had the procedure twenty minutes later. It didn't hurt; it was just a bit of an odd sensation as the needle was inserted. Three days later we were advised that the amino results were clear for the trisomies, and a few days later they confirmed that the full array was clear, along with the CF blood tests. The waiting period for the results was difficult but I felt strongly that I wanted to be prepared for any underlying issues.

At the moment, they can't really do anything else other than monitor me for polyhydramnios. When our baby is born he will need surgery to find out what might be causing the loops and hopefully join everything together as it should be. I feel better that we are being monitored and that we can form a plan in advance of the birth.

We did a lot of googling and I couldn't find much on MN about dilated loops/atresia but the Great Ormond Street Hospital website has some interesting information. www.gosh.nhs.uk/medical-information-0/search-medical-conditions/small-bowel-atresia

Since finding out we have come across family friends who have experienced similar issues and they have experienced positive outcomes.

If you decide to pursue the amnio, hopefully your consultant will keep you chatting during the procedure. My consultant was quizzing me about my job and my DH & I think it really helped to take my mind off of not knowing whether it would hurt. The anti-d injection I had in my arm afterwards was much more uncomfortable for comparison.

Good luck for this week. The decision you make will be the right one for you x

[Primulas]

Thank you for your post Hazlulu, it sounds like your situation is quite similar to ours. We have decided to go for the amnio, which is tomorrow, as we too would like to feel that we are as prepared as we can be. Hopefully too we will be negative on screening tests and then I think I might feel better prepared to start preparing to deal with the bowel issue - we have been given much the same information, that he will need surgery, which they hope will be relatively straightforward, but won't necessarily know until he is here. Thanks for the link from GOSH as well!

[slithytove]

Best of luck tomorrow, I will be thinking of you and your wee one x

[Primulas]

Thank you, slithy - cross your fingers for us!

[slithytove]

All crossed x x x x
When is/was it? How are you

[Primulas]

Thanks, slithy. It was this morning. It went surprisingly okay, though I do feel a little sore now. It was nice to see baby on the screen again at least. Just the wait for the results now...

[slithytove]

Thinking of you... how long for the results? Well done on having it! Have you thought of names?

[Primulas]

Results came back this afternoon - negative for all major chromosomal disorders, very relieved! Now we just have to focus on meeting with new hospital and getting everything in place for surgery poor little boy will almost certainly need when he is born. slithy we had decided on a name, but changed our minds just before we found out about his problems. We're now debating whether to change his name back again in case the new one is bad luck...!