I’m a Carrier for Muscular Dystrophy, and I Might Give it to My Unborn Son

I flew home to Pennsylvania in December to tell my dad I was pregnant with my first child. By then it had been more than a year since my father had been able to get out of the hospital bed that had taken up permanent residence in my parents’ living room. He could no longer stand, lift his arms to feed himself, or use the bathroom on his own.

“We’re having a baby.” I stood next to his bed and puffed my barely-three-months-pregnant belly toward him. He couldn’t speak, but his entire face smiled. His hand trembled as he moved it toward my stomach to touch it.

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“He kicked,” I lied and made myself smile when he made contact. It was too soon for the baby to move. But I wanted to make him happy.

Two days later my dad went to sleep. He didn’t wake up. He was 62.


The genetic mutation that caused Dad’s muscular dystrophy, the disease that caused other diseases that ultimately killed him, lives on an obscure region of his fourth chromosome called q35. Growing up, our family doctors told me I couldn’t inherit it. They were wrong.

I was married for six months when my husband Nick and I started talking to my doctor about having our own baby. The conversation covered all the standard genetics questions and the not-standard ones. Yes, my dad has this disease. No, I’m not a carrier. Are you sure? Actually, I wasn’t. I couldn’t remember the exact conversation with my family doctor. I couldn’t remember if I’d long ago created the narrative in my mind that I wanted to believe.

They took a lot of blood. Six weeks later, I heard back from a chirpy genetics counselor named Violet.

“Hi, Jo! I was surprised by your results,” she informed me in the same tone someone will tell you the winner of The Bachelor. “You do have the genetic mutation.”

I’d read once that some people swoon, actually pass out, when they hear bad news. My joints turned to butter, and I sat down on the floor to listen numbly to her directions about what to do next.

Two voices fought for supremacy in my head.

The first: You should just give up. Stop working. Fuck it! Let your roots grow out, dye your hair green, and sit with the gutter punks down on Haight-Ashbury smoking crack … because why not?

And the second: It doesn’t matter what the tests say. You’ll fight. You’re strong. You’re stronger than you know.

The first voice was so clearly mine. The second was Nick’s.

I couldn’t imagine wanting a baby, living with it in my body for three months, and then ending its brief life because of something that might happen to it in 40 or 50 years.

“You should divorce me,” I said to my husband that night, my brand-new husband who loved skiing and hiking and climbing and riding things. “Maybe the good of being married to me doesn’t outweigh the bad anymore,” I said to him the night after I talked to Violet. “You should find a hot and healthy new wife.” I paused. “Maybe not hot, but someone sturdy!”

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He looked at me like I was nuts and scratched his head. “You know, I measured it. I had these tools to measure the good and the bad of being married to you, and I set up the machine and I did all of these calculations, and you know what happened? The damn machine broke, the good outweighed the bad so freakin’ much.”

I married a good man.

We met with a neurologist to determine whether the muscular dystrophy had already started degrading my muscles. He couldn’t find anything tangible. Yet.

“Because this kind of muscular dystrophy affects the facial muscles, people often have a hard time smiling, and so people often think they’re unhappy,” the doctor said. “Do people often think you are unhappy?”

“So you’re saying a symptom of this kind of muscular dystrophy is resting bitch face?” I made a joke because it was true. Weren’t old men on the street always telling me to smile more? I’d spent most of my adult life being told to “wipe that puss off my face.” I cut to the chase. “What about our kids?”

“They have a fifty-fifty chance. You can’t screen for it in an embryo, so IVF won’t help. You can test a fetus, but not until about twelve weeks, and then you have the option of terminating the pregnancy.” The words terminating the pregnancy hung in the air like a storm cloud ready to burst any second. I opened my mouth but couldn’t say anything. I pinched my thigh above the knee, hard. My nails curled into my skin. I needed to feel something. “We should go,” I finally whispered to Nick. “I just want to go home. Please.”