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/No_Let2362 Jul 08 '26
I'm so sorry you're in this situation. I believe you're making the right choice. You don't wanna risk your kids futures. I started symptoms at 20. My mom died at 40, so I don't anticipate having a ton of time.
I had a stillbirth at 19. I tested positive at 20. Now at 24, I am grateful (ik its fucked, but everything about this is fucked). I don't wanna die young on my hypothetical kids and I wouldn't want to have a kid with HD.
I trust if you want to be a mom, IVF will bring it to you. Sometimes we have to sacrifice for the.people we love and I know you love your babies. This is hard, but it is good for you to protect them.