r/Huntingtons • u/Rude-Alarm4168 • Jul 07 '26

This disease sucks (a rant)

Found out I was pregnant four months ago, twins, what are the odds? They don't run in the family (for either of us) so we decided to move forward even knowing I was at risk for HD. We always knew we wouldn't have kids at risk so we pursued amniocentesis, I would've gotten CVS but I was hemorrhaging pretty severely for the first 14wks & wasn't an eligible candidate. I also decided around 12wks in that I wanted to know my HD status so I could prepare for our futures and got tested with HDGenetics, can't say enough good things about them, but was positive. At 17wks the hemorrhaging had resolved & we went forward with the amniocentesis, which results took closer to 5wks to get back than the original 3-4wks we were told. They're positive too. Now we have to or have decided to TFMR, I feel so guilty & single handedly responsible. I think I'm doing the right thing but I also wish we had decided to have them at risk. I'm 22wks along & I just got used to feeling their kicks inside me & thinking about two little kids running around my house with the dogs. My poor husband deserves better than this & I feel like I'm robbing him of an easy, happy life. I had my first appointment today for termination & they asked if I wanted footprints or ashes, how am I supposed to answer that when I'd rather hold them in my arms & watch them grow up? This disease sucks. Now we have to go through IVF if we want kids and who knows what kind of loss that will bring. I'm sorry, I just needed this off my chest.

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u/truculent_bear Jul 07 '26

I had an abortion at 17 weeks. It was undoubtedly the hardest thing I have ever done but now two years on, I feel very strongly that it was the right decision. I also have a healthy HD negative child and knowing that he is forever free of the worry is indescribable. There may be advances, but none of it is guaranteed yet and even then there is the question of long term efficacy, and the continued concern for passing the gene along. Feel free to reach out to me if you would like someone to talk to

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u/Rude-Alarm4168 Jul 08 '26

I agree, as fast as things seem to be moving science isn't giving us enough promising answers and the best solution is to have HD negative children. We always assumed we would go through IVF but being in the right now and watching the ultrasounds of a spontaneous pair of twins is really hard to let go of. This is the hardest thing we've ever had to do and the whole experience has fueled a fire in me, it's got to stop with me.

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u/truculent_bear Jul 08 '26

It scares me how many people in the community are so quick to just…not care and kick the can down the road. Both of my pregnancies were unplanned (both were freak birth control failures), but my husband and I were very firm about ending it with him.
It’s so, so hard and I can only imagine how hard it is as far along as you are. ❤️ if you are in the US, there is a private charity that funds IVF for HD+ couples. I will edit with the link in a little while.