Can't agree with husband on whether to have amnio

[DifficultSituation999]

Hi all,
I'm 18 weeks into quite a complicated pregnancy.
Blood and NT measurements suggested I'm high risk for a chromosomal abnormality. I'm leaning towards having an amnio, but my husband doesn't think it's worth the risk.
I guess I'm just wondering whether anyone had been in my position as I don't know what to do.
Thanks.

If you're expecting identical twins and 1 twin has T21 (Down Syndrome), then the other will as well.

I'm sorry that I don't have anything constructive to say about the amnio but I would advise you to get the Non Invasive Prenatal Testing of possible.

I have twins and a toddler and I'll just say that your life will change enormously whether the twins are NT or not!

Best of luck OP, it's tough and the choices you need to make are tough as well

Crikey you guys are all lovely.

It's so very good to hear from some people who have been there (although of course I wouldn't wish my situation on anyone!). I just can't talk about this stuff with my friends & their happy, healthy pregnancies, and their inane chitchat about stretch marks and travel systems.

Anyway, I digress.

I do totally agree that I need to keep talking with my husband. I know it's ultimately my decision but everything would just be so much easier if we were on the same page. He has always supported me through everything and I know he will in this case too. If I decided to terminate, I know he would support that decision, too.

KittyandTeal, I'm sorry to hear what you have gone through. I've seen some of your other advice on this board and it is always very well-balanced and excellent. If you are not a healthcare professional already, then perhaps you should be...! Your comments about the "1% mc rate" seem correct to me, as well. I've read that more recent studies have reported a much, much lower incidence of mc following an amnio, for the reasons you mention. I hope this information will reassure my husband, too.

I hope my comments haven't offended anyone. Today I am just very, very angry. Angry that I'm in this situation. Angry that any of us should ever be in this situation! And for some inexplicable reason I am so, so angry with myself. Angry for not being able to grow healthy babies, angry for being a crap and shouty wife, and a rubbish depressed mum to my pre-schooler. I tell other people to be kind to themselves yet I can't seem to find that kindness in me.

Ah! Fuck this shit!!!

I think in your circumstances it is ok to be a bit angry. It isn't fair.

If you do decide to go for amnio, what is the wait time? If it is longish, perhaps book it now and then see.

Twins are tricky pgs to judge.

Good luck.

I opted for amnio despite being clear that we wouldn't terminate a pregnancy for any of the possible conditions. This is because
A. Babies with genetic conditions have high rates of placenta failure and stillbirth and this risk can be mitigated by appropriate monitoring.
B. Babies with genetic conditions may be smaller than average. If the condition is unknown, the small size will be managed as a placenta/growth problem and early delivery recommended which results in a much higher mortality rate for infants with many genetic conditions. For example infants with trisomy 18 have very low 1 year survival if born before 32 weeks. In one study survival was 0 for this group.
C babies with genetic conditions have significantly higher risks of in labour death and appropriate monitoring/c section may reduce this. Not possible to organise if you don't know.

Of course if you plan to terminate if a severe disability is identified. Amnio makes sense.

Amnio is also likely considerably lower risk than reported with two large US studies reporting negligible risk of miscarriage (below 0.02%) risk is reduced in large centres with experienced operators. Though is probably slightly raised for MZ twins though this may be due to the much higher rate of miscarriage with MZ twins anyway especially if any chromosomal anomalies.

I think I'd have a really good discussion about the risks of amnio versus the risks of an unidentified genetic anomaly regardless of whether you'd continue the pregnancy and see if he agrees. In the end however it is your choice not his.

My DD did have trisomy 18 and knowing that got great pregnancy and birth management in place and gave us the time to fight for the treatment the NHS routinely denies to these children. It had massive benefits and I would do exactly the same if problems are identified in my current pregnancy. (We have chosen not to opt for NIPT)

Hope it goes well for you.

Of course you're angry and don't underestimate the effect of double the hormones on you as well.

I'm so sorry you're having to go through all this. I would definitely book the appointment. You cannot afford to waste time waiting for your dh to "catch up" with you on this. Best wishes

Please don't worry about offending people, you need some support and comfort, not to worry about other people.

I think you are understandably feeling very conflicted so I would err on the side of having the test. There may be a huge amount to consider (x2 babies) which might be eased with some time to adjust. Your husband sounds supportive so perhaps a time to listen to your instincts. It's hard to find the inner kindness for yourself, also you have the added hormones to make you feel more emotional. Good luck x

Bloody hell, of course you are angry, quite rightly!

I think in terms of Id twins one twin having a trisomy doesn't always mean the other will. I think (think but am pretty sure) it depends on when the cell first split and started developing. My understanding (from fetal medicine doctors but I may have misunderstood) is that trisomies occur when the cells start splitting and the mis-replicate chromosomes. I don't think all trisomies are a case of the egg already having 3 copies of a chromosome. (I think that's right, I may be absolutely off the mark here, I have basic knowledge of trisomies and how they occur) so there might be hope if only one twin is showing soft markers.

It sounds like your dh might benefit from speaking to arc or your hospitals screening midwife about the risks. Arc are probably better as I think the nhs have a statistic they have to use (the 1:100). If you do have an amnio just to warn you you will have to sign a 1:100 disclaimer type form which may make your dh twitchy.

No one knows how they will react when they get bad or worrying news, refusing an amnio might simply be your dh in a bit of denial (unsurprisingly) Be kind to yourself and each other while you decide, it's such a horrid situation.

Thanks again for lots more sound advice.

Anarchist thank you for your perspective, I hadn't looked at it that way. I now see it could be valuable to have the amnio even if we choose not to terminate.

Bottom I think I'll follow your advice and book the amnio, just in case.

KittyandTeal I think you are correct in stating that even though my twins are ID, they would't necessarily both be affected. My consultant said that although it's most likely that they both have it/neither have it, there are some cases in which only one ID twin is affected.

Thanks again guys.

That is interesting that you have been told placenta placement doesn't impact on the amnio- when I was under kings with DD2 and we were deliberating having an amnio, my consultant advised against it as we had a relatively small chance of abnormalities and the placement of the placenta meant it would be harder to carry out the test safely?

I never researched it further, I just took her judgement as gospel- I would be really interested to know if this is true or not.

Hi everyone,

Just thought I'd update this thread after all your kind words.

I've just had the amnio. We had a few more chats with the consultant and we felt this was the right decision for us. My husband got to ask all his questions and felt reassured by the answers. The care we have received at every level (consultant, screening midwife, secretaries etc.) during this difficult time has been incredible. I feel so lucky to live where I live and receive this amazing care.

The amnio itself was very surreal. I kept my eyes tight shut and thought about my babies all along. My husband was amazing and held it together when I couldn't, and my doctors were so reassuring & kept saying everything was going really well. It did hurt a bit (more than taking blood, not sure who came up with that analogy), but it didn't hurt a lot - Just some minor discomfort really.

So now I'm in the waiting period. I know this is the worst time for most people but to be honest, with all the possible complications we've faced since day 1 this whole pregnancy has basically been one massive "waiting period"! Even if the amnio gives us the all clear there will still be other things to worry about. But for now I'm feeling positive. My babies are stable and the amnio went well, and that's all I can really ask for today.

Many thanks again for all your kind words and thoughts, and warm wishes to anyone who is or has been in this situation.

I'm so pleased that the amnio was straight forward and I really hope you get your answers quickly.

Glad to hear that you're doing OK so far and that the staff have been good. That's so important.

Hope you get some positive results.

Hey guys,

I just had the first set of results back - All clear!
I've actually had a relatively "calm" and "relaxed" couple of days, but this afternoon at 5pm I was a total wreck - Crying and sweating and throwing up in the toilet at work. Then, thank God, I got the call. We're still waiting for the full results though the biggest risk for me based on my bloods and NT was T21.

There's still a long road ahead for my little twins as they are still facing some other issues related to their growth, but at least I can tick this one off the list of possible problems.

Thanks again guys.

Brilliant :) so pleased for you xx

I've just chanced upon this thread so sorry to butt in but your update brought a lump to my throat. Brilliant news

Thanks guys🙂

Hello just wanted to say am glad to read your update and hope all goes well for you and your twins for the rest of the pregnancy and that the growth issue doesn't become more of a concern. I am expecting ID twins too, but must be a couple of months behind you as am only 14 weeks but your post brought a lump to my throat as I thought of all you are going through. Very best wishes to you

Thank you Surf and congrats on your ID twins! Don't let my situation scare you, please! I had a spectecularly bleak outlook at 12 weeks but things are looking better with every week that passes:-) Most women expecting MCDA twins do go on to have healthy babies, so chances are you will be just fine! Hope you are receiving good antenatal care xxx

Oh don't worry, it didn't so much scare me as just have an insight into the worry and stress that it must have been/be for you, if that makes sense. I think somehow carrying twins I just seem more aware of or have my eyes open to more of the potential complications and fragility of life than with previous single pregnancies. Anyway it's not about me!! I hope you continue to receive good care too!

I definitely know what you mean Surf! When I had my first child I happily sailed through pregnancy and birth without a care in the world. Never even considered complications of any sort! This time with the twins I'm hyper aware of anything that could go wrong. It's pretty nerve wrecking!

Hi guys,

Just a further update to my situation: I got the all clear for the full array this morning! This was 10 calendar days following the amnio, so luckily I didn't have to wait too long.

If anyone stumbles across this thread because they find themselves in my situation (partner unsure whether to have the amnio), I would say that it is possible to reach a decision together and to feel positive about that decision. The key for us was talking together, lots, at a time when we were both feeling relatively calm; and also talking with the consultant/midwife lots. A lot of my partner's concerns stemmed from not having enough/the correct information, and being able to ask questions really helped. I guess everyone is different, but that's what worked for us.

Best wishes to everyone!

I'm so pleased you had the outcome you wanted, I hope you are now able to enjoy the rest of your pregnancy.

Didn't see the original thread, but so pleased everything worked out for you and I hope you can enjoy the remainder of your pregnancy

Just came across this thread and so pleased to read your last update. I had an amnio with my eldest and well remember the wide array of emotions.

All the best with the rest of your pregnancy and your wonderful twins xx