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

How I decided to move forward with a pregnancy without genetic testing.

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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?

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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!"

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?"

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"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."

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I couldn't wrap my head around it. I believe any woman should be allowed to choose to end a pregnancy for any reason. Many years ago, as a scared seventeen-year-old with a college-acceptance letter unopened on her nightstand, I did make that choice, and it's among the best decisions I've ever made.

But it wasn't the right choice now. 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. It felt like playing God.

I'm petrified and excited and I feel like I've just leaped off a very tall building, but I think that's the beginning of being someone's mom.

The doctors told us that if the child carried the muscular-dystrophy gene, they wouldn't show symptoms until midlife.

Like me.

As a mother, you want your child to come into the world with every possible advantage. Why would you choose to start their life at a disadvantage? But how do you stack the odds in your kid's favor? We knew we could adopt or use a donor egg, both expensive things that would have to be put on a credit card we might be able to pay off never. But even donor eggs and adoption come with risks, but they come without THAT risk. All genes come with their own drama. Borrowing someone else's DNA just meant strange new possibilities. They could get cancer, or Alzheimer's, alcoholism, schizophrenia. They could be predisposed to liking speed metal or wanting to be on reality television.

Then again,under most insurance classifications my muscular dystrophy would be considered a preexisting condition. That means my personal insurance premiums could go through the roof if companies were legally allowed to discriminate based on preexisting conditions. It meant my future child could have difficulty getting coverage right from the beginning of its life. It didn't escape me that the very people putting these restrictions on health care were simultaneously restricting abortion rights to make it more difficult for a woman to choose to have an abortion if she learned that her baby had one of these preexisting conditions. I didn't get a full night's sleep for six months from all the worrying.

"What if we didn't live our lives according to what might happen in the future?" my exhausted husband said to me one night as he was drifting off to sleep. Nick is steeped in optimism and trusts that things will turn out the way they are supposed to. I'm the child of an alcoholic. This means that, with most things in life, I'm convinced everything must be micromanaged in order to be safe. I worry. He has faith. Since our doctor's appointment, I had spent months convincing myself that if I just talked to enough doctors, if I just worked harder, if I just spent enough hours on the Internet reading medical journals, then I could find the solution to this problem. But there was no easy fix. "What if you stop trying to control everything?" Nick asked me. "You know we can't control everything. Can we please just live our lives?"

***

We stopped taking birth control last January. It took nine months for me to get pregnant. We didn't test him at twelve weeks. So far he's healthy. He does somersaults when I play Otis Redding and eat frozen Thin Mints. We'll run genetic tests when he's born. We'll find the best doctors to take care of us both. Any future is terrifying, but this one could also be promising and filled with the possibility of medical advances that could halt the progress of my own disease and eradicate it in a child.

Everything can go wrong when you decide to have a kid. We knew one possibility. For the first time in my life, I have to have faith. The best-laid plans can quickly turn to shit. I have to wait and see. I'm petrified and excited and I feel like I've just leaped off a very tall building, but I think that's the beginning of being someone's mom.

Jo Piazza is the author of the memoir How to Be Married.

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