To have amnio or not? Please help!

[MrsW1911]

I'm really worried about the risk of having a miscarriage. But I also know that I need to find out of my baby has any genetic conditions. My baby has exomphalos which carries a 30% chance of another disorder like Down's, Edwards etc but I just can't help worrying I'll cause a miscarriage by having the test! My husband is insisting and I so feel the same but I'm slightly torn.... ARGH!

[Ludways]

I had an amnio with my second pg. The key is to do some relaxation exercises and to relax not just your body but your mind too. Then rest for as long as you reasonably can. After the results I could enjoy the rest of my pg.

Good luck and congratulations on your pregnancy

[itsbetterthanabox]

Would you continue the pregnancy if the foetus did have another condition?

[melw74]

I had a few red flags come up on my scans. The only way i was told to find out for sure if my baby had problems was an amniocentesis. I was given 1=100 chance that my baby would be born with down syndrome, and other problems, I was also told that this would be the same figure of my chances of having a miscarriage through the procedure. I chose against having it. The only problem my son had when he was born was a bowel problem that was solved with medicine.

Hes now 17 and have no problems at all, but it could have gone the totally opposite way.

The only way you will know for sure is if you have this test, so that is your decision alone.

Its such a difficult position to be in. I wish you well.

[Sleepyfergus]

I had an amnio with my 2nd pregnancy. I was 39, had a borderline nuchal which came me a high risk factor of 1:92. We were offered CVS or amnio, or of course do nothing.

The risk for CVS was higher than amnio, and after looking into it, discovered that the risk factors they give are generalised, and that actually the doctors carrying out the procedures generally have near perfect track records, so statistically, the risk of cm is much lower.

For me I had to know what we were dealing with. Was there a problem or not. Otherwise my pregnancy would have been stressful and full of angst. Thankfully, everything was fine. If we had had a bad result, I'm not sure what we would have done, and I guess we'll never know and I try not to think of that now.

That actual procedure is quite surreal and emotive. You are covered in a theatre gown and swabbed with iodine. They take a scan to check where the baby is and then decide if they can go ahead. The weirdest hung is watching the needle on the screen trying to break through the amniotic sac. But it's over with quite quickly and you don't really bleed! Ou have to keep quite still and relaxed for 24 hours after the procedure. My DH took our dd1 away to his folks for the weekend, and i literally lay on the sofa all weekend with lots of TV dinners and the remote/magazines.
It was actually quite relaxing and oddly enough, I felt dd2 kick/move for the first time that night, which heartened me. The results came back v quickly (procedure some on the Fri, initial results on the Mon) so it wasn't too torturous.

Beat of luck whatever you decide. It isn't easy.

[Sleepyfergus]

Sorry for the typos, hopefully it makes sense!

[WLondonMum]

I had the same worry. Could you afford to have it done privately? As another poster says the miscarriage risk is generalised so a very experienced doctor may have a very low miscarriage rate. If you are in London you could go to the FMC who are truly amazing.

[SoonToBeSix]

I would never have an amnio, you can't change the outcome so I would rather not have the worry.

[SaggyAndLucy]

I had a cvs. I had high odds for DS at the 12 week scan.
I decided that I needed to know. But only because of the risk of Edwards or Pataus. I could and would only ever terminate for a 'not compatible with life' diagnosis.
As others have said, you need to decide what YOU want . As I explained to my partner, I had to be able to live with myself in the future.

[sandgrown]

I wanted it done because of my age. I needed to know if there were any problems. I can honestly say I do not know what I would have done if DS had had serious problems. Lucky all was fine. The procedure was a little uncomfortable but that's all. The tests came very quickly and they rang us a hour before we went on holiday so we could relax.

[willywallace]

Can you afford a Harmony test instead?

[GettingFiggyWithIt]

Hello OP

Whilst I don't think your husband should be pushing you into it, nonetheless if your baby is going to need an op asap (great Ormond st?) I would want all the info I could get.
It depends also whether knowledge of Edwards or downs is a deal breaker for you.
I have had two manila, both fine. I paid for fast tracking of results. The procedure was not uncomfortable. I spent two whole days drinking fluids, eating well and laying down to be on the safe side whereas my mum went straight back to work and my sister was fine. This was years ago...the risks with any procedure are there but I didn't think twice about my second amino having had one with dc2. Good luck xxx

[GettingFiggyWithIt]

amnio not manila obv.

[KittyandTeal]

Is it worth having a harmony test first?

I had an amnio up at Kings. While I was told the risk of mc was 1:100 (my risk of edwards was 1:43) the doctor also said he had never come across anyone who had suffered a mc after an amnio.

Like a pp said, the risk is generalised. Lots of women who have amnio have one because of issues with the baby, I imagine it's hard to separate those mc that have happened after an amnio but were a result of issues with the baby to those caused by the amnio.

I think if I'd not had our amnio and termination my baby wouldn't have lasted much longer. It was so quick to induce labour my body was obviously already preparing for her to be born early anyway.

I'm sorry you are going through this stressful time.

[Tiredstressed]

I had a cvs with my second pregnancy. My DD has a genetic condition and we want to know if the second child will be affected. The risk of miscarriage is low. I suppose it depends what you intend to do with the results. For us, it was worth the risk to know. Good luck.

[MrsW1911]

Thank you all for your replies....
We would onky terminate if it had Edwards or something not compatible with life. Also if the baby will have a poor quality of life. If it has DS we will be keeping it and loving it unconditionally ??

I think my main worry is the miscarriage risk and when I say my husband is insisting he's not forcing me or anything he is being sensible, I know it's best for us and baby to find out now if anything is wrong. I just worry that I'll have the test and then miscarry. I can't get it out my head.

I just want to relax!!!!!

[KittyandTeal]

What soft markers have they found to suggest having an amnio?

It's tricky but you have to weigh the risks. I had low Papp a and hcg levels. On a detailed scan at Kings they found cysts in my dds brain, a gap in her cerebellum vermis, a hole in her heart and what they thought was a fused arm and non flexing hands.

With the bloods and the 5 soft markers to me it was obvious something was wrong and although we could have turned down the amnio it seemed silly to. Our thoughts were the same as yours, anything incompatible with life and we would terminate (ds wasn't a risk as my hormone levels were all wrong to indicate ds)

As it was the amnio came back positive for T18 and we were able to make a choice. We chose to end our pregnancy and save our dd pain and suffering if she had been born alive (which was very unlikely)

I'm happy for you to pm me if you want to ask anything or chat.

[Sleepyfergus]

Kitty - sorry to read your experience did not have a happy outcome.

[MrsW1911]

I haven't had my bloods back yet so I guess if they come back clear, could it suggest that the amnio MAY come back clear too?

[KittyandTeal]

If your baby has just the one soft marker (have I read your op correctly?) maybe ask about a private harmony test. If you don't already know, it's a blood test that will give you a general risk factor for the three major trisomies.

If it came back high risk then you could then be in a better position to decide on an amnio. It may well come back low risk (1:10000 is the lowest risk I think, I may have missed a 0) then you know an amnio would be a risk for almost nothing.

[KittyandTeal]

Thanks sleepy, it's been a very hard road so far but it has made me realise that I can cope. People worry about the worst possible outcome (very understandably, no one wants it to happen to them or their baby) but it has made me realise that even with the worst possible outcome you can cope and go on.

[MrsW1911]

I have heard of the harmony test the doc told me about it. The reason we are probably doing the amnio because I know that my baby has a 30% chance of having another "issue" not necessarily Down's, it could be a heart defect or something but a 30% chance of something. I will have a look at the harmony though thank you xx and thank you for helping

[SaggyAndLucy]

you hear a lot of praise on here for Harmony, but I'm not necessarily convinced. Apart from the fact that it still only gives you odds, there appears to be quite a high failure rate for the test.
In my opinion, if you need to know for definite, then you need an amnio or cvs. its invasive, yes, but you get a full and accurate genetic work up. There are no odds, ifs, buts or maybes. And by all accounts the actual miscarriage rate is incredibly low. If Harmony gives you a high risk then chances are you'll want an amnio later anyway.
Anecdotally, having spent a very long time on the baby boards and on here, I've only ever read of one mc post test. And in a lot less time on this board, I've already read of 1 person told by harmony that her odds were low and who still ended up with a DS diagnosis after a further late amnio. (her thread is up now.)
And to whoever said that the worst case scenario might not necessarily be so bad, yes, you are SO right! I wouldn't say it out loud but I think I probably love DC3 with DS more than I love anyone else on earth! She is AWESOME! :-)

[SaggyAndLucy]

Also, having been through this whole horrible experience, I would also say, odds are okay. They give you an idea of what might be, but actually knowing, well in advance, what you are looking at is a life saver. If I'd been told after birth, when I was tired, hormonal and emotionally drained that DD has D'S, and I then had to go and break it to the world, I'm not sure how I would have coped. Knowing is scary, but you have months to prepare, to get your head straight and to tell people. All you then need to focus on post birth is yourself and the baby. I wouldn't have wanted it any other way.
I'm bothered that your DH is pressuring you, but if it was me, all over again I would.

[Tiredstressed]

I had the Harmony test with my last pregnancy. As you say, it doesn't check for everything and you will still be sent for diagnostic tests if the results suggest high risk. Given that Harmony takes 2 weeks for results, I would consider going straight for the amnio. Particularly if there is some doubt about what the marker relates to.

[cookielove]

When I was pregnant with ds we were offered amnio, CVS or do nothing. We were told by our genetic counselor that while the harmony test is good she has hasseen several couples who had had a clear result from the harmony and then later scans have indicated problems :( therrason she said that the NHS don't fund it is because it isn't accurate enough,!

A CVS wouldn't have worked for me as they were checking for a genetic condition I was carrying, and I thought at the time the amnio was too risky (if i had known about each surgeons grneral risk i msy have been swayed) although dh would have had it done if it was his body! They did offer (which we took up) genetic testing after he was born.

Hugs to you!