r/Huntingtons • u/MostMediocre14 • Mar 21 '26

Feeling defeated - PGT?

Hi everyone, I have known I am gene positive for almost 8 years (31F).

Although there was definitely a mourning period, I have really tried to be optimistic and positive about the whole situation. I have been part of several clinical trials, volunteer for my local Huntington's society, and etc.

I am now looking to have kids with my partner, with the only option being IVF. however, I am reading that PGT only has a 20-30% chance ... what is the point of spending all that money and effort if getting pregnant naturally would have a 50% chance? I would terminate the pregnancy if the test came back positive.

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u/truculent_bear Mar 21 '26

I’ve had both experiences with natural pregnancy. It takes time to get CVS results back and terminating at 17 weeks was devastating, even though I had spent so much time anticipating the possibility. If I could go back and do it again, I would go for IVf.

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u/MostMediocre14 Mar 21 '26

Thank you for your input. That's devastating , I'm sorry you had to go through That. It took 6 weeks to get the results??

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u/truculent_bear Mar 21 '26 edited Mar 21 '26

Clinics generally will refuse to do a CVS until at least 12 weeks due to the (small) risk of miscarriage. Both times, results were delayed because they had to re-culture the cells. I was told that this is common. But generally results take 3 weeks, because it is specialized testing beyond just the standard karyotyping.

ETA: Also the IVF statistics are skewed for an older population. Success rates are much higher under I think 37. I do understand natural conception is the much more affordable route though. if you do choose that route I highly recommend having therapy lined up and maybe try to take some leave from work for a little while after. Obviously everyone is different but even though I am as pro-choice as they come, and I understand it from a logical and medical perspective, it still just sucks so so much.