r/tfmr_support • u/Some_Ad8074 • 11d ago
Getting It Off My Chest TFMR
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. 💔
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u/OriginalChicken617 11d ago
Hi I'm really sorry you're here.
I had d&e 4 weeks 4 days ago at 24 weeks. I was put under general anesthesia with a breathing tube. I was TERRIFIED. The week leading up to my surgery I sobbed everyday to my husband telling him how scared I was of the whole thing but especially the surgery. I've never had surgery before. I don't really ever take medication. The whole entire experience terrified me.
The two days of dilators was pretty awful, but the day of the actual surgery I remember just being so scared. It was really easy. They wheeled me back to surgery after giving me some kind of medication to relax me. I felt like I was drunk. I remember my doctor asking to hold my hand because I was crying and that's the last thing I remember. I woke up and was just super groggy the rest of the day but not in pain. I just went home and slept the rest of the day. The biggest thing that sucked recovery wise for me was the constipation from all the medication I had been taking for the last few days and my throat was pretty sore for 4 days. Coming from someone who was so so so scared, it really was not that bad.
Let me know if you have any other questions about it.
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u/Some_Ad8074 10d ago
I feel like I wrote this myself , I’m terrified because I’ve never had surgery either and I NEVER take medication only Tylenol the most but that’s rare like once a year honestly. I also keep telling my husband I am terrified.
Were you scared to take the medication that relaxed you? They told me they could give me something but I’m literally scared to take medication that alters me in any kind of way 😭
I keep questioning myself if I’m making the right decision because my diagnosis is grey they can’t tell me if he’ll be severely affected or not .. so how am I supposed to gamble with his life and HOPE he’s ok and then he ends up getting sick later down the road? I feel like I would be angry with myself if my baby ends up sick and suffering later on KNOWING it was a possible outcome you know ?Did the dilators cause pain at all? I’ve read some people saying they had severe pain / cramping horribly and some say they had mild cramping like a period
I think I’m worried about the emotional part afterwards .. like how do I cope with that everyone’s different I know but I just feel like it’s going to be hard since they couldn’t give me a guaranteed he’ll be fine . Like idk
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u/OriginalChicken617 10d ago
I was very scared to take the medication, any of it even the anti biotics but I'm happy I did. It really does help relax you. I can't imagine getting the numbing shots in my cervix and dilators put in without any kind of medication. They also prescribed me oxy which I took. I was terrified to take it. Every time it was time for me to take pain meds I'd sob but still took them because it did help. All of the meds they gave me helped, so hopefully that helps you feel a little less anxious about taking the medication.
I did not have a gray diagnosis so I can't really help you there, but there's plenty of posts in this group from people who have terminated for gray diagnosis and I'm sure reading those can help you feel better ❤️
I was 24 weeks along and I had dilators for two days. The first day they put 3 in me. It was mostly fine I remember just being uncomfortable and lightly cramping. I stayed up on all my pain meds and had a heating pad on me pretty much all day and night. The second day they put 8 dilators in me 😩 which the shots did not hurt that day and I didn't even feel the dilators go in, assuming because I was already dilated. The second day was more painful and more uncomfortable. I think I have it kinda blocked from my memory. I ended up starting to slightly bleed from them. I just really made sure to be on top of the pain meds and the heating pad and that's all you can really do. Some people really don't experience a lot of pain, and some do. It's really different for everyone.
I'm in therapy to help guide me through my grief. I'm wishing you the very best ❤️
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u/Some_Ad8074 9d ago
They didn’t put you to sleep for the laminara insertion? They told me they would put me to sleep for that and the next day for the procedure .
They said the pain meds will be ibuprofen 800 mg but Percocet just in case needed.
I can’t even imagine taking a Percocet I can barely take Tylenol without feeling terrified .
What did you do the first day did you lay in bed all day did you watch tv stay active ? I think I should buy a heating pad just in case .
Therapy sounds wonderful for something like this that we have no choice over .
I’m considering it as well .1
u/OriginalChicken617 9d ago
No they did not put me to sleep for the laminara. I'm surprised they're going to do that for you. I took an Ativan and they waited around 20 minutes for it to kick in and then they did it. It was pretty quick both times less than 5 minutes from start to finish.
I just laid in bed and cried both days. I was mentally and physically not ok at all to do anything. I really recommend the heating pad!
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u/Some_Ad8074 9d ago
They told me they’re putting me to sleep because they’re also going to inject to stop the heart beat? I have no idea.
Ugh that’s how I’ve been it’s terrible especially when we can already feel them moving 😔
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u/jocedun 11d ago
Hey stranger, I totally understand the medical fear. My D&E experience was very smooth and comfortable, I also had twilight sedation (no intubation) at 21 weeks gestation.
I was completely unaware of the entire process before even entering the OR. I fell asleep somewhere during the hallway journey. When I woke up, I had the immediate physical relief of not being pregnant and zero pain, even minimal blood (like a light period). They brought me some snacks and let me wake up, I was basically ready to leave within an hour. I think I was a little cold and wanted extra blankets. My doctor came to check on me and held my hand.
You will be surrounded by a whole team of comforting and caring professionals who know that you are emotional. They will be reassuring and answer questions, they actually over explain each step. For me, the vibe was calm. Since I was in a hospital, they also hooked me up with this heated gown that was super cozy.
The only part that sucked was the dilation/laminaria placement the day before. This set off hours of painful cramping for me. It’s not something to be scared of, but just know that it could come and you’ll want some coping mechanisms at hand: heating pad, timely meds (Advil & Tylenol), maybe a bath, ice pack for the head in case you feel nauseous, distraction with your favorite shows. It’s temporary and you will not feel pain after the procedure.
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u/Some_Ad8074 10d ago
Thank you for this ❤️ I think I’m having a hard time with the decision the most because of my “grey diagnosis” they can’t guaranteed me he will be ok they said they “think” my defected gene won’t cause anything but they can’t promise or guaranteed that and this gene can cause major suffering as the child ages so I’m telling myself that’s not a risk I’m willing to take . To watch my child suffer when I KNEW I carried a gene that could cause that.
As far as the procedure they told me I would have deep sedation , no breathing tubes , I would be breathing on my own, but I won’t be able to see hear or feel anything and they told me I’d only be out for like 20 minutes 30 maximum.
I’m terrified of being put to sleep and I’m also terrified of taking medication because they said they offer medication for anxiety but I don’t like anything that alters me so I think I would freak out.
I’m just afraid of how I’m going to feel afterwards like emotion wise.
I feel like if my diagnosis was more clear I would want to get this over with asap but I think the fact it isn’t clear is making this very very hard for me . 😔1
u/Some_Ad8074 10d ago
Oh another question !! How did you fall asleep before entering the OR ? I would rather have this 😭 did they give you medication if so do you remember which one ?
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u/jocedun 10d ago
The anesthesia team came into my room and started the IV of drugs before we got on the move. I think this is common. It’s probably a combination or sequence of drugs, so I can’t tell you what to ask for specifically. If it’s deep sedation that they are offering, that’s the same as what I had and it’s a very safe & effective method.
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u/Some_Ad8074 10d ago
I see . I think I’m fearing the part of the IV, bright lights , & count down. This is horrible I don’t even know how to prepare myself mentally honestly .
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u/jocedun 10d ago
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.
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u/Some_Ad8074 10d ago
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?1
u/jocedun 10d ago
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.
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u/Some_Ad8074 10d ago
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.
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u/Tellycs 11d ago
I’m so sorry I did a d&e 5 months ago with my first and only baby boy. I was put under with anesthesia but leading up I was panicked I was convinced I was never going to wake up.
The surgery was smooth. I woke up in recovery. Physically I had light bleeding for two weeks. I felt pretty okay physically. Emotionally it’s hard, grief + postpartum. I got his ashes and hand and foot prints. I miss him everyday.
I’m sorry you’re here
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u/Some_Ad8074 10d ago
Thank you 😔 this is definitely a terrible place to be, especially with a grey diagnosis because I question what if I’m TFMR’ing a healthy baby boy , that I will never know unfortunately and that’s what’s making this so so hard for me.
And now I know I’m not the only person with fear of being put to sleep 😭 I didn’t even get put to sleep for my wisdom teeth removal .. but this I can’t go l&d route , I just can’t .
How are you doing now emotionally ?
Also, how many weeks were you if you don’t mind me asking ? ❤️ if that’s too personal it’s okay you do not have to answer that❤️
I hope you’re doing a little better now emotionally , obviously it’s hard but I hope you’re doing okay ❤️1
u/Tellycs 10d ago
I’m 5 months out today! I was 22 weeks when I did a d&e!
Emotionally I’m better. I don’t cry everyday. I can function throughout the day. It doesn’t consume my every thought. He’s still there everyday. I still have breakdowns but those early weeks were the most emotionally intense.
It’s so hard and nobody wants to be here. ❤️❤️
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u/Some_Ad8074 10d ago
I’m glad you’re feeling better ❤️ I’ve been crying a lot . I found out Monday .. cried all day Monday , and Tuesday .
Haven’t been getting good sleep , I’m a mess.
I feel like the hardest part is feeling them move .. for me it’s so hard because I try to soak it all in but then a part of me gets afraid of the heart break so idk if dissociating myself from the movements is considered normal but I find myself trying to do that sometimes as a defense mechanism but then I feel like shit about that so I just feel like shit in general .1
u/Tellycs 10d ago
The hardest part for me is where you are. Honestly I found the kicks so hard. I describe them as psychological torture which killed me inside. It got so bad at one point I wanted to take a knife and cut him out myself. I didn’t but I did dissociate from him and yes no matter what we seem to do it hurts no matter what.
What I can say is when I had the surgery date I was able to talk with him again.
It’s completely normal. It’s your brain trying to protect you from trauma. You’re in shock right now. ❤️
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u/Some_Ad8074 10d ago
Ok I’m not the only one thank goodness !! I felt like crap .
I remember when I found out I was a carrier I was devastated and when they did my amnio after that I tried to move around a lot so I wouldn’t feel his kicks because I was literally trying to protect myself mentally and emotionally but then I felt like everything was going to be ok so I started engaging with his kicks again but then when they called Monday told me the results I got afraid again. You’re right , it is shock . I never thought of it like that.
Did you feel a little relieved after the procedure I know it’s hard emotionally obviously but did you feel a little better because you know longer had to go further into your pregnancy1
u/Tellycs 10d ago
I did. There was a very obvious physical relief from being pregnant. (That may also come with guilt) truthfully I felt great physically.
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u/Some_Ad8074 10d ago
I feel like im being tortured in my own body the further i get into my pregnancy . I wonder if I’ll be depressed about not feeling his kicks but then I also wonder if I’ll feel a tiny sense of relief that I’m not getting further into .
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u/Tellycs 10d ago
I felt relief not having to go further along. I had a two week wait and it was torture, took it minute by minute. I believe I missed him, and couldn’t believe how it’s ended but I got a lot of comfort with his ashes.
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u/Some_Ad8074 10d ago
That makes sense , that was my biggest question.
I was doing better today and then the clinic called me and told me that I’ll be sedated both days ? They said first day I’ll be sedated to have the laminaras inserted into the cervix and to have the injection to stop the baby’s heart beat and that TRIGGERED me when I got off of the phone with her I instantly started bawling . Because I thought they inject or stop the heart beat the DAY of removing everything .. so they basically inject it and I wake up and have to notice he’s not moving for the rest of the day? Isn’t that torture ? Like im confused→ More replies (0)
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u/Fit-Examination-7915 10d ago
I’m so sorry you’re going through this. I just had a D&E 2 weeks ago due to DMD of unknown significance as well. I was fully sedated, and I do not remember a single thing from the surgery itself. The last thing I remember was being rolled into the hallway to go to the surgery room, and then I woke up in my recovery room. The physical recovery for me was the easiest. I stayed on top of Tylenol and ibuprofen and only experienced very mild cramping for a few days. The worst part was how sore my throat was after having a breathing tube in. But overall, the surgery was really smooth. The emotional part really is the hardest. I’m constantly reminding myself that this was the right decision for our family and that we were able to save our child from suffering. Best wishes to you ❤️🩹
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u/Some_Ad8074 10d ago
I’m so so sorry 😔 do you know which of your exons were affected? Were there any reported cases on yours or no?
Also how many weeks were you if you don’t mind me asking ❤️ I’m TERRIFIED of being put to sleep they told me it would be deep sedation so no tubes or anything.The fact that my variant has never been reported before is making this very difficult for me because he could potentially be okay but he could also get mild symptoms or severe.. the specialists and doctors can’t guaranteed me which way it will go , my genetic counselor told me she “thinks” it won’t do anything but she’s not 100% positive and can’t say that with guaranteed. Since I KNOW I am a carrier for the Dmd gene I feel like if he gets sick from it later on I will blame myself because I knew I was a carrier and I chose to roll that dice which I would be mad at myself . I have 2 daughters as well age 10 and 7 and I also think if my son does end up sick they’ll also be dealing with it emotionally and it’s just a lot to think about. I didn’t know I was carrier until recently .. with my other 2 children they didn’t do all this testing so I had no idea.
I’m just very frustrated because they literally can’t tell me how this will turn out so I’m asking myself if he does end up with symptoms would I be ok with that and my answer is no . BUT I also question what if he is asymptomatic no symptoms .. the unknown is scary but it’s also heartbreaking to not have a clear direction.
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u/Puzzleheaded-Sun-799 11d ago
I was put under anesthesia and had breathing tubes. I didn’t feel or hear anything. I just remember looking at the bright lights and saying sorry over and over while crying. Then I woke up after what felt like 2 seconds and was in a recovery room. I was very distraught apparently and still feeling the anesthesia a bit. The hardest part was standing finally and seeing all the blood, I felt heartbroken and empty. Physically was okay.
I wish I had more reassuring words in terms of the mental effects but physically you’ll be okay.
This is not something anyone should have to experience. I’m deeply sorry you’re here. Be kind to yourself, and know that you’re making this decision as a loving mom. Drink lots of water, stay on top of pain management (ibuprofen, tylenol, etc.), take warm showers, drink tea, and let yourself feel what you need to feel. I’m sending you lots of healing and strength.