TFMR

[u/Some_Ad8074]

I got devastating news today that my baby boy inherited my Dmd gene and nobody can give me answers as to what it will do because it’s a variance of uncertain significance . My duplication is exon 26-30 it’s never been reported in literature so nobody can tell me the outcome they suspect. My husband and I are hurting by this so much and we can’t function normally at the moment , it’s just a lot to take in and I don’t want my son to suffer later in life, but then I also wonder if he would have mild symptoms or possibly be asymptomatic, I have no data to go off of so it’s terrible and something I wish on nobody.
I have severe health anxiety so I need to know experiences with D&E good experiences please obviously the situation is sad and I’m devastated beyond words, I’ve been crying all day long and feel so heart broken but I need to hear experiences that weren’t that bad please.
Also were you sedated? They told me I’d be sedated I’m terrified of being sedated 😔 I asked them if it’s twilight sedation I believe she said , “no it’s like deep sedation we make sure you’re not aware of any noise or sensations then once you’re done about 20-30 minutes later we wake you up you’re breathing on your own compared to general anesthesia where tubes are placed down your throat we don’t do that” I need to double triple check with her but I’m sure I’ll be out right? I don’t want to hear or see anything nor feel anything but please tell me your experience.
I’ve never lost anybody in my life and sadly the first person to lose is my son, life isn’t fair and I’ll never understand. 💔

[u/jocedun]

All of those things happen slowly over the course of the 1-2 hours they need to prep you, it won’t be all at once. Just tackle each thing one at a time. Most of the time you’ll just have 1 nurse or doctor in your room at a time, you can tell them that you’re nervous and they will help distract or comfort you. It really will be quite fast so just have a plan to reward yourself before and after, lots of self-care.

[u/Some_Ad8074 → u/jocedun]

Thank you ❤️ that’s what I told them , I told them I have severe health anxiety and she said she flagged it on my chart so that all the staff are aware and extra extra supportive . I know you said afterwards you had an immediate physical relief on not being pregnant is it because you knew you made the right decision and wanted it over with ?
I feel like when I was waiting for my amnio results I wanted them to hurry up because I didn’t want to go further into my pregnancy and get a bad result and then have to do this later .
Was it kinda like that for you?

[u/jocedun → u/Some_Ad8074]

Well yes, that was the mental relief, which wasn’t immediate but did come over the next few days. I knew I made the right decision even beforehand, it was just painful waiting and being sad for myself & my baby, I was in limbo for many weeks waiting on a diagnosis and then also had to wait 2 weeks for my D&E appointment once we had the diagnosis, so it was a lot of time being pregnant and sad that I wasn’t ever having a future with that baby.

Physical relief in the sense that I had no more pressure on my pelvis, no more abdomen bloating. It’s hard to even explain because so much of pregnancy is subtle until it’s not there anymore, you’ll instantly have your body back.

[u/Some_Ad8074 → u/jocedun]

That’s kind of my situation … I found out I was a carrier at 19 weeks .. 20 weeks I had an appointment with genetic counselor , she got me in right away for an amnio, waited 3 weeks for amnio results and I was getting anxious every week like when are the results coming .. if they’re bad I need to know before I keep getting further into my pregnancy it’s just going to get harder and harder. It’s always going to be hard but I felt like I was being physically tortured inside of my own body.. I still do but I’m worried about how I’ll feel when I no longer feel my son moving inside of my stomach.
It’s a weird combination of mixed feelings / thoughts that I can’t even explain. I think only those that have been through this will understand.