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.

ultimately it's your body and your decision.
hope everything goes well!

Thanks Blue. I tried to explain exactly that (my body, my decision) to my husband but it's a hard thing to explain. Not because he is controlling or anything (quite the opposite!) but just because we always make important decisions together.

The thing is though, if they were born with severe problems, I feel like my life would change most drastically, in practical terms anyway. I would be the one whose career would be affected most (I work PT in a competitive but flexible environment. He works FT in a very inflexible environment and earns more, so he would have to keep working to pay the bills, whereas I feel like my career would basically be over).

Also, we love travelling and being spontaneous and climbing mountains and going to parties. We already have one toddler and we're happy we've managed to maintain this life style (toddler basically comes along on all adventures!), and I don't see how we could maintain it if we had a severely disabled child. I know this might sounds frivolous to some but this is our life and we love it the way it is.

I just cried at my husband and told him he should just leave me if he can't be supportive. My husband is my best friend and we have a great relationship (when we're not in pieces because of a fucked up pregnancy) so I'm upset about this.

Sorry to speak so frankly, I just don't have the energy to pretend anymore.

Aren't there new tests out called panorama which do a full genetic screen

You would have to pay to have it privately but wouldn't have the increased risk of miscarriage X

This just one place that does it approx £500

www.thebirthcompany.co.uk/non-invasive-prenatal-test/panorama-test/

Do you have an anterior placenta? How risky is the risk for you given placenta placement?

Could you make an appointment to discuss having the procedure so your DH can listen to the pros and cons?

My mum was advised to have this when pregnant with my brother. She decided not to because of the (small) risk of miscarriage but mainly because she and my Dad decided they would have the child regardless of any genetic abnormalities it may have had. Maybe that's how to decide. (Not judging at all, I'm not sure what I would do in your position).

My brother is fine btw

What was your nt measurement? as the blood tests and nt scan aren't always accurate.

I would go for panorama though as it's quick and not putting the baby at risk either

Do you want to know so you are better prepared or so you can make a decision on termination?

Your body, your choice in the end.

Hi all,

Thanks for your answers. I would like to know because if they had a severe genetic disorder, I would choose to terminate (if I know I wouldn't terminate then I wouldn't risk the procedure!).

Scary, because the procedure is guided by ultrasound I don't think is any riskier if you have an anterior placenta. I might be wrong in which case please link me the evidence:-)

With regards to the Panorama test - Is that the same as the harmony? My (NHS) consultant does not rate it highly as it only has high reliability for Downs and Edwards (and 80% detection for Pateau's). He says that would still leave me wondering whether a different genetic condition might be causing my symptoms.

2yummy my NT was very high - 4.2 or so I believe. However this is complicated by the fact that I am carrying ID twins who share a placenta. One had a high NT and one had a normal NT. In ID twins such and NT discordance often points in the direction of problems with placenta sharing rather than a genetic issue. This is why the screening interpretation is not straightforward. Even though it's "accurat" for ID twins, it doesn't take into consideration that the increased NT might have other more likely causes (such as uneven placenta sharing).

Thanks again for your comments.

It's says on panorama website that it has a 99% accuracy for downs and 92% for others

How have other family members been, are they supportive? X

Hi 2yummymummy2,

Thanks I'll have another look at that link. I don't feel comfortable discussing the amio with family/friends as I don't want their opinions to cloud mine, if that makes sense:-)

Have you considered contacting ARC? Although I've not used them myself I believe they are very supportive and can provide impartial information and unbiased opinion

It's says on panorama website that it has a 99% accuracy for downs and 92% for others

How have other family members been, are they supportive? X

Yeah of course
I think I would feel the same. I'm currently pregnant but I would terminate if I was faced with something like this X

If your husband doesn't think it's worth the risk is that because he wouldn't want to terminate if there's a problem? If he doesn't and you do then you are going to need to talk talk talk about this. My body, my choice, however true, will not end well.

Is there someone you could talk to together to talk through your feelings / options? (Arc might be able to recommend someone?)

I think if you would choose to terminate if this DC is severely disabled then yes, you should go ahead and have the amnio. Its your body, your choice and, as you say, your life will be most affected by the birth of a severely disabled DC. Given that you usually have a supportive marriage with good communication I think you need to keep talking. But if he simply will not come around to your way of thinking then at that point its your choice. Just make sure you can rest for the appropriate amount of time afterwards. Get a childminder, if necessary, to stop you overdoing it.

Im so sorry you are in this situation. Personally id go ahead with the amino regardless of partners support. The risk of miscarriage is very low. Ask your consultant what the hospital's own risk us. Mine was 0.5%

Harmony/ panorama could give you a more accurate idea but it will delay the evitable need for an amino if results still come back high risk. Plus the further you delay the harder any termination will be.

Thanks guys. I just can't believe I'm in this situation:-( I'm findings things really fucking hard today:(

I'm so sorry you are in this position. Talk again to DH. Ultimately if you can both be comfortable with whatever you decide it will be better. No room for blame later.
How does it work with twins? Would they test them both?
I hope that all goes well for you regardless of what you decide

I agree about keeping talking.
I think it's also worth understanding what your DH means about 'it's not worth it'
Have a chat about how he feels about termination, how much the difference in readings is due to placenta issues rather than chromosomes issues.
And what about the future, dies he see you shouldering all the caring if there is an issue, does he see that as fair, an issue, has he taken your feelings about caring fur a disabled child(children) into consideration?

Plenty of questions to look at to really understand how he has made his judgement.

Another issue of course is how do you feel about the amio etc.
I'm getting the feeling that o e if your issues is that you normally discuss things whereas this time, he has made his decision so there is little discussion to be made with you. Is that right?

Would he support you in terminating OP?

Has he considered the impact a severely disabled child would have on your older child's life?
This was one of the drivers for me to have an amnio with DC2, after being told my risks were v high. I didn't want DC1 to end up being a carer or being marginalised growing up, in any way.
It was so difficult, I really feel for you. Just keep talking. Also, is there any pre-amnio counselling available at the hospital? We had some and it was very helpful

Hi op.

I have experience of a tfmr at 22 weeks. Out dd2 had trisomy 18 which is lethal.

I had an amnio at 21 weeks after dodgy bloods and some soft markers on our anomoly scans.

The 1 in 100 mc rate that is quoted by the nhs is actually quite inaccurate. It is a figure based on a very old report which itself was based on a collection or small studies. The doc who did my amnio had never had a healthy baby die after an amnio. The figure also included those babies who were very ill and died between the amnio and the results, those babies would have died anyway, regardless of having an amnio.

You can have a harmony or panorama test, I've had the harmony. They are brilliant for a clear negative screen but are only 99% accurate for Down's syndrome and less so for the other trisomies, many people would be unwilling to terminate with those stats. An amnio is 100% diagnostic.

I think there are some additional risks of tfmr with twins (would be termed a selective reduction) so if I recall rightly there is a window at which is is best to do.

I'm so sorry you are going through this, especially with your DH and you disagreeing.

You could come at it at a different angle. I decided an amnio was worth it as I could make what I thought was the right choice for my baby. In terms of twins I'm not 100% sure but the risk of one dying inutero put the other at risk (I think, there is a lovely lady on here who has had a selective reduction and went over all the risks clearly)

I would echo the pp suggestion of arc, they are a brilliant, impartial but well informed charity who can go over all the risks with you.

DC2 was fine btw, despite the high risk for Downs & Edwards.

So sorry for what you're going through.

I have been through this ( I had a CVS at 11 weeks after a high NT result) and our baby had a very serious chromosomal abnormality that would have resulted in very poor quality of life, and possibly a low chance of longevity. We chose to terminate the pregnancy.

I became pregnant four months later, had an amnio, and our son is healthy and thriving now.

My consultant had been doing amnios and CVS tests since they began and there had never been a miscarriage on his watch. His belief was that babies who were miscarried after such a test were likely to have been miscarried anyway. He also said the majority of patients having the tests were older mothers, who have a higher mc rate, and that also, the timing of the test usually comes at around the peak time for mc anyway. if there is something wrong with the foetus, that also increases the chance of mc.

In other words, his theory was that the test itself does not cause miscarriage.

I would advise you to have the amnio, and I have been in your shoes. I wish you all the best. It's a difficult thing to go through.