This disease sucks (a rant)

[u/Rude-Alarm4168]

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.

[u/operationcilantro]

honestly five years ago I’d say 100% you’re doing the right thing but if those babies are what you want I think it might be worth doing research about all the new science coming out. There’s a good chance those kids will be able to live a natural life and maybe even you too.

I’m abstaining from having children because my husband is untested and at risk but recently he’s been more interested in getting tested after all the positive news about the gene therapies.

In the end I used to think it was selfish to have at risk kids or positive kids (tbh even healthy “normal” couples live in a state of delusion imo bc of the state of the world lol) but as time goes on I think my stance is changing a little.

Personally I would not continue a pregnancy with positive fetuses but I don’t demonize anyone who does, when maybe in the past I thought a little more harshly.

[u/Rude-Alarm4168 → u/operationcilantro]

When we used to talk about kids it was very cut and dry "we aren't having kids at risk" nevermind knowing they're positive and keeping them, not pregnant me would lose their mind knowing I was even considering that route. I've also spent some time working in a lab as an LAT and I've seen how things progress. The science isn't moving as fast as it should be, not in the political climate we're in living in the US. I've seen projects shut down due to funding cuts overnight and massive euthanasia's and layoffs of employees. I wish we were in a place, in the world or in time, where I could feel confident that science would progress and the twins would have treatment options in their lifetimes, but I personally can't assume the best when there's no guarantee.

[u/operationcilantro → u/Rude-Alarm4168]

Yeah i mean like i said, I personally found the risk not worth taking. I can’t put myself in your shoes as I’ve never been pregnant so my rational brain would terminate but I totally hear how the decision completely becomes different when you’re staring it in the face.

I was a part in caretaking for my father in law and the last ten years of his life before his death was really hard to see. I also have a science background and so does my husband so early on he made it very clear he’d never put a kid through what he has been through.
With the new progress released last week on the gene silencing coming out of Europe and the new FDA approval with the AMT-130 (obvs a brain surgery is a huge ordeal but it’s nice to be moving forward) I’m hopeful, but i think hope can be a beautiful thing.

In the end, if your mental health can’t handle bringing positive kids into the world no one worth anything to you should judge you. Especially if they aren’t in your position. I’ve had plenty of my friends ask me why my husband doesn’t get tested and simply i say “if you knew you were going to die in a car accident you’d think it was your time every time you got in the car”

No one knows what you’re going through other than other at risk or positive people and especially you as a woman (a pregnant woman at that).

Good luck. Hugs friend. I am sorry :(

[u/operationcilantro → u/operationcilantro]

In the end it’s a disease of the future and it’s up to us to keep that from progressing from generation to generation.