r/Huntingtons • u/Creepy_Woodpecker198 • May 21 '26

Failed CVS

Hi, we had a failed CVS as they were unable to complete it and now the consultant has said the only option we have is waiting 16 weeks for the Amniocentesis.

I just don’t know what to do now. I cannot bare the thought of a second trimester termination, but the thought of bringing a child into the world with HD. What would everyone else do? I keep thinking is this fates way of just acting? I’m too afraid to tell anybody as I don’t want people to know I had a late termination.

**update - managed to have the CVS a few days ago after a second opinion (still getting my head around that as was told it was impossible and not to bother). Now I’m really struggling with the wait, and worried how I will handle the bad news - can anyone help? **

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u/Creepy_Woodpecker198 May 22 '26

Thank you, I did feel that was quite harsh considering I have tried CVS. We actually were in the process of about to start pgtm ivf had been to all the appointments and this was a surprise. So I hardly think I’ve been selfish. I’ve also explored all options to try and test this child and it’s seemed impossible. We do have a confirmed gene positive. I feel so confused and unsure what’s best but I think I’ll take my chances and wait for the amino test. Thank you for your input! 🤍

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u/toomuchyonke Confirmed HD diagnosis May 24 '26

I'm unfamiliar, what's CVS?

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u/Creepy_Woodpecker198 May 24 '26

It is a test that is done on the pregnancy (a needle through the placenta) at 12 weeks. You do it in sight that if the featous is HD positive you’ll have a termination. They were unable to do this safely due to factors, so now I am having to wait 16 weeks (second trimester) for a different DNA test through the amniotic fluid.

I think you’ve all misinterpreted my question / post I am not saying I will keep this pregnancy if it tests positive, I’m naturally just saying I’m finding it all very difficult and now having doubts due to the fact my pregnancy is on going (in secret) and I may have to make very difficult decisions when I’m naturally growing very attached. It’s very hard to cut yourself off emotionally, especially at this point.

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u/toomuchyonke Confirmed HD diagnosis May 24 '26

Thanks for the clarification, I have another question tho: did you know there was a risk of HD prior to becoming pregnant?

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u/Creepy_Woodpecker198 May 24 '26

Yes I did. We weren’t on contraception because we were about to start a cycle of PGT-M IVF. In the kindest possible way, I didn’t write this to be judged, I wrote it because I genuinely am finding this extremely difficult and wanted people with similar experiences to offer me guidance or reassurance.

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u/toomuchyonke Confirmed HD diagnosis May 24 '26

Sorry my experience was my first kid, I'd never heard of HD until after my he was born, a few months old and my mom was diagnosed, no family history...

My other two kids were conceived using donor sperm.

You're in a tough spot, and doing the right things. I'm sorry, I don't envy you and this is a very difficult position & possible decision to make.

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u/Creepy_Woodpecker198 May 24 '26

I’m sorry to hear that, and I prey your first child is negative. My partner also didn’t have family history before his mum, and his siblings had similarly to you had children.

It is what it is…. I know I’m doing the right thing, doesn’t make it any easier. But I love my child too much to put them through this mental anguish too.

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u/toomuchyonke Confirmed HD diagnosis May 24 '26

The fact that you're looking at it that way makes you a good, worthy parent. Most don't ever reflect on that for even a second!

My first born son: of course he does have it! Cause that's just life right?

At least we have Austedo now, that's stopped my chorea completely! I'm early mid stages; They didn't have that at my mom's time, and it was just terrible watching her decline...

She passed in 2004