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Can you have and do you want children?
People have a variety of reactions and opinions towards the topic of a person with a disability having children. If your type of MD is invisible, outsiders may assume that you’re able and willing to conceive or have children with your partner. But, if your disability is visible, others may seem awkward when such a subject is brought up. They may assume that you’re unable to conceive or be a good parent because of your disease.
Have you been asked been asked if you can or want to have kids by a stranger or not so close friend/family member? What was your answer and how did the person react? Do you want conceive but fear that it will put your health at risk? Have you considered adoption or having a surrogate? Are you afraid of passing in your Muscular Dystrophy to your children?
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7 Replies
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I have three children, all in their 30s, and all of them are carriers but will never have LGMD2L because it is autosomal recessive.
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Dani, yes since my wife does not carry this faulty gene my kids can only be carriers. In fact, they are automatically carriers. But will never have the illness.
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Leah, absolutely a relief and I hope else can find some real solutions in the coming years so I’m last impacted generation
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Dani, yes. If the other person had the specific LGMD2L mutation, then each child would have a 25% chance of having both genes, and therefore the illness.
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Yes that’s a complicated question. Let’s set aside for the moment the fact that 2L is rare and the chances of them meeting someone with the same mutation are very slim. And the fact that 2L is a later onset, for me I was 47. Which leads me to think that even if I had a grandchild born today with 2L they might not have symptoms until almost 2070 and I think we will solve some of this by then. But all that aside, I agree with you. I think each person needs to decide. And definitely I think most people would say they are glad they are alive and it was all worth it. But these must be decisions that we each make. Not easy.
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This is a complicated question for sure!
I had a huge fear of passing DMD onto my future children. I could not imagine bringing a child into this world when I knew they had a chance of inheriting the illness. Also, Duchenne has weakened my heart to a point where carrying a child would have created a serious medical decline for me. For these reasons (and also due to endometriosis) I opted to have a hysterectomy about 5 years ago. It was NOT an easy decision and one I wrestled with for a decade before making a final decision. Also, I have a wonderful husband who has supported me through the process.
Adoption is a possibility for us, but I also worry about being healthy enough to take care of a child or children. My weakness may make it hard to do the things other healthy mothers can do. Can I be a parent and manage my illness? Will my husband have to take care of me and a child? Can I keep working? There are many unknows.
I sometimes can’t imagine living my life without experiencing motherhood and other days it feels impossible!
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I think, as women, it is still expected of us to give birth to our children. It’s ingrained in us to create a family and when that dream is suddenly paused or interrupted it can very disappointing. I’ve always known I wouldn’t be able to have kids because of my fatigue and it’s something I’ve come to terms with over the course of many years. Because my disease is invisible outsiders (like my boyfriends parents) assume I can still have kids.
Kudos to you for getting a hysterectomy. I know Endometriosis can be a painful disease. I hope it cured your symptoms. I have considered getting one because a) periods are a hospital sentence for me and b) I have no need for the organs. But it’s a big surgery and I don’t do well under anesthesia.
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