What It’s Like Having Children as a Duchenne MD Carrier
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I didn’t think we would ever have more children after I found out 10 years ago that I was a carrier of Duchenne muscular dystrophy.
But here I am in the homestretch again, in the last trimester of pregnancy. The weeks have been flying by, but my pregnancy seems to be taking forever, and I can’t wait for December to get here. That’s because I can say the baby is due next month, which sounds more doable than thinking I still have 10 more weeks to go.
Being a mom suits me. I love it and all the parts of it, even the not-so-glamourous ones. Becoming a mom has always felt like a fairy tale happy ending to me.
I had been looking for some control in my life after muscular dystrophy became part of it, but finding out that I was a Duchenne MD carrier felt like the decision about whether or not to have more children had been made for us, and I grieved that loss.
We had another daughter after three of my four boys were diagnosed with Duchenne, and we are expecting a third daughter soon. After months of grieving about my Duchenne MD carrier diagnosis, and after the shock wore off, my husband and I resolved to follow our Catholic faith, which meant natural family planning. We remained open to children if that was the plan for our family, but we used natural family planning to try to avoid getting pregnant.
I feel vulnerable saying this, but the truth is that I believe my decision to use family planning was my personal decision, one that was informed by my faith. As a carrier of a rare and fatal disease, it was not an easy decision to make, but I did what I believed was suitable for our family. I would never judge someone else’s decision, so I guess I’m asking for the same.
Becoming pregnant after getting diagnosed as a Duchenne MD carrier was complicated. I felt so many strong emotions associated with the genetic implications. I was scared, because if the baby were a boy, it could be born with Duchenne. I wondered how our house would accommodate another power chair. What kind of van could carry them?
But I was excited, too. New babies bring joy and happiness, and I was happy about the pregnancy once the shock wore off.
I’ve also thought just about every dark thought possible. During both of my pregnancies after having the three boys with Duchenne, I would hold my breath until I knew the babies were girls. Now we can laugh more easily. We’ll be nearly 60 when the one on the way graduates high school!
After Duchenne became a part of our life, and as our family continued to grow, we leaned heavily on our faith. I look back now and think what a perfect plan. I’ve come to believe that we were always supposed to have three sons with Duchenne. The fact that our family has grown by daughters strengthens that belief.
And the kids have been excited, too. Most of them were young and don’t remember the last time there was a baby in the house. They are looking forward to the experience. I share in their excitement, although the first couple weeks of raising a new child likely will feel like a refresher course for my husband and me.
As my due date approaches, I have some worries, too. It’s getting hard for me to lift and transfer the boys as my belly grows and my core muscles weaken. I’m worried about going into preterm labor, although I never have before. If I did, I’d have to go to a hospital hours away from our small town, and my husband would be forced to stay behind with the boys.
I wonder how I will take the baby with me to all the boys’ appointments. I did it once, but that was seven years ago, when their needs weren’t as great.
I know I’ll learn how to do it. We will find a way. We always do.
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