Talking with my daughter about her journey with DMD carrier status
Lexi and her husband are expecting their first child later this year
Written by |
I have been writing here about my family since August 2021. My husband, Jason, and I share seven children: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie have Duchenne muscular dystrophy (DMD).
In my first column, I shared that my husband and I were expecting our seventh child. We had not told many people yet, so it surprised our family and friends!
Well, life in the Vertin family is coming full circle. This week, I get to announce that Lexi and her husband, Nick, are expecting their first child. I can’t wait to be a “gigi!”
There has been a concern that my daughters could be carriers of DMD, meaning my future grandchildren could have Duchenne. This week, I want to talk more about what that looked like for Lexi, who was tested last year after she was married, and learned that she was not a DMD carrier.
Waiting to find out about carrier status
When my sons were diagnosed with Duchenne in 2010, Lexi was my only daughter. Geneticists talked to us about the possibility of her being a carrier and encouraged us to have her tested right away. My husband and I did not want our then-9-year-old daughter to go through that, however. If she had been a carrier, that would have been a lot for a young girl to understand and carry into adolescence and beyond.
We understood that her carrier status would affect the way she would feel about having children. I wanted her to wait to find out her carrier status until she was married and could decide, with her husband, whether to have children. We also knew, though, that if she had been a carrier, her heart could be affected, so a cardiologist followed her until she knew her status.
That was the extent of my involvement. Once she was married, I was there to support and help her through the process, but she took the reins.
I asked Lexi some questions about the process and am sharing her answers below.
BV: Did you always know you wanted to be tested before you had a baby?
LR: Yes, once I knew that being a carrier could be inherited, I decided I wanted to know whether I would be a carrier before deciding whether my husband, Nick, and I would have our own children.
Were you scared to get tested?
I was not scared of the answer, but I was scared of the future. I have seen what Duchenne does to my brothers and our family, and the weight it carries. Selfishly, I didn’t want my future family to carry the weight of Duchenne. As parents, Nick and I knew we didn’t want to see our own children endure Duchenne the way my parents did.
There is beauty within Duchenne, but there is also the reality of what it does. I didn’t want Duchenne to be a possibility. I wanted healthy children. I love my brothers with Duchenne. I felt guilty about not wanting to be a carrier because I didn’t want it portrayed as if Duchenne or my brothers were a burden, which is not the case, whatsoever. However, it weighed heavily on me until I got my results.
Nick and I were relieved to learn I was not a carrier.
If you were a carrier, would it have changed your path to motherhood?
Nick and I had many conversations around this. It’s a hard decision I’m thankful we didn’t have to make. However, prior to knowing whether I was a carrier or not, we were leaning toward adoption. We did not consider in vitro fertilization (IVF) or similar options due to our Catholic faith.
We didn’t have a final decision. Honestly, we wanted to build a family and have our own child, so we held out hope. However, we knew the risk that we would be taking if I were a carrier, and we decided that starting our family with a biological child wouldn’t be our first option.
I’m thankful that Nick was patient and understanding in having these conversations. In those conversations, I realized that it does matter who you marry.
We now know we will be welcoming a daughter in November, and I see how excited he is for our next chapter and for being a dad. I couldn’t imagine not being able to give him the gift of life we created together. In retrospect, I would tell the scared Lexi and Nick to take the chance, because life is truly the most special gift.
Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
Leave a comment
Fill in the required fields to post. Your email address will not be published.