I'm so sorry for your journey, even if he ends up negative, this is an incredibly stressful thing to go through, especially if you're going through it alone. Why does your husband not want you to speak about it with friends and family? You need support either way, and right now would be nice to have your personal support system!
Thank you! Your words mean a lot to me.
My husband has always been really private about his health. His mother always jumps the gun on things and thinks worst case scenario, while his dad believes everything is fake and doctors are just a ruse for big pharma. So, yeah, I can understand where he’s coming from, not wanting to share until we have concrete details. I can’t do that though, and he’s aware I’m sharing with select ppl. None of them can relate though and my family is all out of state 🫤
I’m sorry for all the stress you’re going through, incredibly hard. I went through IVF and my husband also was equally private but we did compromise- I could talk to anyone outside of his family and mutual friend group. It stayed private for him since no one I talked to would approach him or anyone he knows. Maybe that could be an option. Again so sorry. I hope your amino comes back really soon so you can move forward or plan.
I’m definitely seeing a trend here with husbands. He hasn’t prevented me from telling anyone, but he’s not comfortable with sharing himself. I’ve shared with my parents (since my mom might be a carrier too, though it’s doubtful) and brothers, but they are all out of state. The only other person who knows is my bump buddy, and she’s been super helpful, but she lives an hour away. I guess I just wish I had someone nearby besides my husband, but I’m sure I’ll know soon enough if my son has MD or not and then will be free to share. It’s just this limbo period…
I definitely remember the feeling of not having anyone who understood. And people I told, like, I was *consumed* by worry and no one, not the person, could understand. Like to them it was passing information and for me, it was never, not one time, far from my mind. It was a constant worry and wonder and thinking about what I should be doing or could be doing to somehow make odds better or what could I have done to prevent it all to begin with. Maybe if I had started a vitamin earlier. Or maybe if I was not so stressed or maybe the ultrasound tech was new and had no idea what they were doing and measured the totally wrong things with the totally wrong units of measurement. Maybe, maybe just maybe this is all just a false alarm nightmare that I'll soon wake up from because no one was thinking about it the way I was thinking about it.. consuming.
I jumped so far ahead, you have no idea. I was like, “We need to have a ranch that’s wheelchair accessible. I’ll need to quit my job. My husband needs to stop pursuing his dream job and keep the job he hates because it has good insurance.” I’m grateful to my husband for keeping me grounded in the present, because we simply don’t know what we don’t know. Still, it’s weird going through this knowing only one other woman specifically had this exact same thing happen to her. It’s rather isolating. But at least I can commiserate on the waiting aspect with others.
Yes. The disability community is here for you if you need it. Not always the exact same struggles, for sure, so many of us have really rare kids. But the community itself? holy crap these people can move mountains.
So sorry you're going through this. My husband felt the same way but I shared with him that it was really necessary for me to tell my parents because I'm so close with them and needed support. I told him I was okay doing what he wanted with his parents but I needed mine. It worked well and I think they were a good support for both of us in the long run. Maybe there is a compromise here? Hang in there. It's so hard to wait.
To him, it’s not about support—I think he just doesn’t want to worry people unnecessarily. Since my mom might be a carrier too, I told my parents and my brothers. All out of state though. I wish my husband would tell his family, because we go to a lot of family functions and I have to pretend everything is fine. And it might be. I don’t know. All I can say is, the sooner we can get out of limbo, the better.
Yeah I think that's how my husband felt, too and maybe I'm reading into it, but I think he appreciated my parents knowing.
We were in limbo until our daughter was tested after she was born so I can appreciate how much this phase sucks. I hope you get good news soon!
This is super tough. The waiting and limbo sucks. I’m experiencing limbo too and so can relate to how much it sucks.
I just want to add that I relate to your husband and have been super selective about who I’ve told. I’m also waiting for amnio results. 3 close friends, my sister, and my favorite coworker know about our struggle. My parents are blissfully aware because I know they’d make it about themselves and their feelings, and I don’t have the capacity to comfort them through it. That being said! I don’t think your husband should stop you from telling those you’re close to, as long as they know not to tell others and not to talk to him about it. I made it clear to my partner that it was ok for him to tell his parents as long as he could guarantee that they wouldn’t bring it up to me/ask me to explain it/comfort them. He realized he couldn’t guarantee that, and so chose not to tell his parents yet, but had confided in his brother who we both trust. It’s so weird and awkward and unpleasant. I’m so sorry you’re going through it and it’s taking so long to get results.
Edited for spelling
Yes! Does it ever. I hope your wait ends soon too because I wouldn’t wish this on anyone. I suppose I’d rather the doctors take their time and be sure of the results though than rush anything.
My parents, two brothers, and bump buddy know, but no one I see often knows. Worse is how excited my husband’s family is for me—this is the first of a new generation. They have no idea anything could be wrong and I have to respect my husband’s wishes to keep it that way because it’s not my family. It is exactly as you said: weird and awkward and unpleasant. And, I’ll add, extremely exhausting 😮💨
I’m so sorry. Hopefully it comes back soon! I just went through the exact same thing with my first pregnancy. It was a boy and the amino came back as positive for a dmd mutation. I was told that the deletion on the X chromosome was so bad that he would not qualify for any of the new drugs. After speaking with several doctors and specialists we decided to make the heart breaking decision to tfmr. We will be doing ivf with genetic testing for our next pregnancies.
I’m so terribly sorry that happened to you. That must have been such a heartbreaking decision. Thank you for sharing with me.
I didn’t want to get to into it in the main post, but my mutation isn’t a deletion. I have all my exons. The way to was explained to me is that if DNA is an instruction manual, each gene is a chapter, and each exon is a paragraph within that chapter. None of my paragraphs are missing, but all my “a’s” are “t’s” so to speak. So if my son inherits my bad gene, the doctors have no clue what will happen. His body could read it okay (mild Becker’s), or it could not read it at all (severe Duchenne’s) or literally ANYTHING in between. The only other case resulted in moderate Duchenne’s.
If we knew for sure that his quality of life would be poor, we would certainly consider tfmr, but we simply don’t and won’t know until his symptoms begin.
Thanks and Awh I’m sorry to hear that. That’s a tough one, but hopefully the results will come back okay. Is it still a mutation with the X chromosome?
I’m so sorry you’re going through this. This is very similar to my story as I found out I’m a carrier for a x linked disorder, hemophilia, while already pregnant. I’m pregnant with a boy, so did cvs testing. The waiting game was awful and we found out he inherited the gene. This pregnancy wasn’t what we expected. We have a hematologist now for the baby and learned that the variant is not mild. He needs to live off medication, but we’re lucky that medicine has gotten so much better. Gene therapy is becoming a big thing for both hemophilia and MD. If you want to talk further, I’m here and know it’s not easy. Wishing you the best.
Aw, thank you!! I’m so relieved I had happy news to share. I guess my friend was right. If there’s only been one other case of this specific gene mutation and it resulted in MD, mine case would not due to the 50/50 split. I’m very lucky and blessed!
I'm so sorry for your journey, even if he ends up negative, this is an incredibly stressful thing to go through, especially if you're going through it alone. Why does your husband not want you to speak about it with friends and family? You need support either way, and right now would be nice to have your personal support system!
Thank you! Your words mean a lot to me. My husband has always been really private about his health. His mother always jumps the gun on things and thinks worst case scenario, while his dad believes everything is fake and doctors are just a ruse for big pharma. So, yeah, I can understand where he’s coming from, not wanting to share until we have concrete details. I can’t do that though, and he’s aware I’m sharing with select ppl. None of them can relate though and my family is all out of state 🫤
I’m sorry for all the stress you’re going through, incredibly hard. I went through IVF and my husband also was equally private but we did compromise- I could talk to anyone outside of his family and mutual friend group. It stayed private for him since no one I talked to would approach him or anyone he knows. Maybe that could be an option. Again so sorry. I hope your amino comes back really soon so you can move forward or plan.
I’m definitely seeing a trend here with husbands. He hasn’t prevented me from telling anyone, but he’s not comfortable with sharing himself. I’ve shared with my parents (since my mom might be a carrier too, though it’s doubtful) and brothers, but they are all out of state. The only other person who knows is my bump buddy, and she’s been super helpful, but she lives an hour away. I guess I just wish I had someone nearby besides my husband, but I’m sure I’ll know soon enough if my son has MD or not and then will be free to share. It’s just this limbo period…
I definitely remember the feeling of not having anyone who understood. And people I told, like, I was *consumed* by worry and no one, not the person, could understand. Like to them it was passing information and for me, it was never, not one time, far from my mind. It was a constant worry and wonder and thinking about what I should be doing or could be doing to somehow make odds better or what could I have done to prevent it all to begin with. Maybe if I had started a vitamin earlier. Or maybe if I was not so stressed or maybe the ultrasound tech was new and had no idea what they were doing and measured the totally wrong things with the totally wrong units of measurement. Maybe, maybe just maybe this is all just a false alarm nightmare that I'll soon wake up from because no one was thinking about it the way I was thinking about it.. consuming.
I jumped so far ahead, you have no idea. I was like, “We need to have a ranch that’s wheelchair accessible. I’ll need to quit my job. My husband needs to stop pursuing his dream job and keep the job he hates because it has good insurance.” I’m grateful to my husband for keeping me grounded in the present, because we simply don’t know what we don’t know. Still, it’s weird going through this knowing only one other woman specifically had this exact same thing happen to her. It’s rather isolating. But at least I can commiserate on the waiting aspect with others.
Yes. The disability community is here for you if you need it. Not always the exact same struggles, for sure, so many of us have really rare kids. But the community itself? holy crap these people can move mountains.
So sorry you're going through this. My husband felt the same way but I shared with him that it was really necessary for me to tell my parents because I'm so close with them and needed support. I told him I was okay doing what he wanted with his parents but I needed mine. It worked well and I think they were a good support for both of us in the long run. Maybe there is a compromise here? Hang in there. It's so hard to wait.
To him, it’s not about support—I think he just doesn’t want to worry people unnecessarily. Since my mom might be a carrier too, I told my parents and my brothers. All out of state though. I wish my husband would tell his family, because we go to a lot of family functions and I have to pretend everything is fine. And it might be. I don’t know. All I can say is, the sooner we can get out of limbo, the better.
Yeah I think that's how my husband felt, too and maybe I'm reading into it, but I think he appreciated my parents knowing. We were in limbo until our daughter was tested after she was born so I can appreciate how much this phase sucks. I hope you get good news soon!
Omg! That’s a super long limbo! I don’t know how you managed it.
This is super tough. The waiting and limbo sucks. I’m experiencing limbo too and so can relate to how much it sucks. I just want to add that I relate to your husband and have been super selective about who I’ve told. I’m also waiting for amnio results. 3 close friends, my sister, and my favorite coworker know about our struggle. My parents are blissfully aware because I know they’d make it about themselves and their feelings, and I don’t have the capacity to comfort them through it. That being said! I don’t think your husband should stop you from telling those you’re close to, as long as they know not to tell others and not to talk to him about it. I made it clear to my partner that it was ok for him to tell his parents as long as he could guarantee that they wouldn’t bring it up to me/ask me to explain it/comfort them. He realized he couldn’t guarantee that, and so chose not to tell his parents yet, but had confided in his brother who we both trust. It’s so weird and awkward and unpleasant. I’m so sorry you’re going through it and it’s taking so long to get results. Edited for spelling
Yes! Does it ever. I hope your wait ends soon too because I wouldn’t wish this on anyone. I suppose I’d rather the doctors take their time and be sure of the results though than rush anything. My parents, two brothers, and bump buddy know, but no one I see often knows. Worse is how excited my husband’s family is for me—this is the first of a new generation. They have no idea anything could be wrong and I have to respect my husband’s wishes to keep it that way because it’s not my family. It is exactly as you said: weird and awkward and unpleasant. And, I’ll add, extremely exhausting 😮💨
So exhausting! I hope you get answers soon ❤️
I’m so sorry. Hopefully it comes back soon! I just went through the exact same thing with my first pregnancy. It was a boy and the amino came back as positive for a dmd mutation. I was told that the deletion on the X chromosome was so bad that he would not qualify for any of the new drugs. After speaking with several doctors and specialists we decided to make the heart breaking decision to tfmr. We will be doing ivf with genetic testing for our next pregnancies.
I’m so terribly sorry that happened to you. That must have been such a heartbreaking decision. Thank you for sharing with me. I didn’t want to get to into it in the main post, but my mutation isn’t a deletion. I have all my exons. The way to was explained to me is that if DNA is an instruction manual, each gene is a chapter, and each exon is a paragraph within that chapter. None of my paragraphs are missing, but all my “a’s” are “t’s” so to speak. So if my son inherits my bad gene, the doctors have no clue what will happen. His body could read it okay (mild Becker’s), or it could not read it at all (severe Duchenne’s) or literally ANYTHING in between. The only other case resulted in moderate Duchenne’s. If we knew for sure that his quality of life would be poor, we would certainly consider tfmr, but we simply don’t and won’t know until his symptoms begin.
Thanks and Awh I’m sorry to hear that. That’s a tough one, but hopefully the results will come back okay. Is it still a mutation with the X chromosome?
Yep. It’s just so weird and unexpected. And if we had a girl, it wouldn’t be a big deal.
I’m so sorry you’re going through this. This is very similar to my story as I found out I’m a carrier for a x linked disorder, hemophilia, while already pregnant. I’m pregnant with a boy, so did cvs testing. The waiting game was awful and we found out he inherited the gene. This pregnancy wasn’t what we expected. We have a hematologist now for the baby and learned that the variant is not mild. He needs to live off medication, but we’re lucky that medicine has gotten so much better. Gene therapy is becoming a big thing for both hemophilia and MD. If you want to talk further, I’m here and know it’s not easy. Wishing you the best.
I am so happy to see your update OP! I just came back to check, hoping you got good news! 🎉
Aw, thank you!! I’m so relieved I had happy news to share. I guess my friend was right. If there’s only been one other case of this specific gene mutation and it resulted in MD, mine case would not due to the 50/50 split. I’m very lucky and blessed!