From Carrier: Untangling the Danger in My DNA

By Bonnie J. Rough

On a rainy day in April, the phone rang: a number from the hospital.

“Hi, Bonnie? It’s Beverly, your genetic counselor.” There was something in her voice.

“Hi, Beverly, how are you?” A strange thing in my own sound.

I had been waiting eight months to find out whether I was a carrier of hypohidrotic ectodermal dysplasia, or HED. The result of my DNA test would reveal whether my husband and I would face painful choices as we looked toward our first pregnancy. The disorder in my family was carried invisibly by mothers and passed only to sons, who would have sparse hair, few teeth, no sweat glands, and a distinctive facial bone structure, among other possible symptoms. HED was not immediately life-threatening, I had learned, but it could be profoundly life-altering.

“I wanted to give you good news,” Beverly said. Her voice cracked. “But maybe this will be better, so you won’t have survivor’s guilt. This way, maybe your brother won’t be the only black sheep in the family.” She took a breath. “The test came back positive. I wanted it to be negative, Bonnie. But you’re a carrier.”

I heard Dan, who had been reading under his breath in the next room, fall silent.

“Oh, I knew it,” I said to Beverly, trying to sound unfazed. “It seems like I’ve always known.” My favorite thing to do, in fact, was to know things. But over the past year, I had set myself up. As I studied my family tree and searched my face in the mirror, I had decided that my childhood doctors were wrong when they diagnosed me as a probable carrier. That was before genetic testing, I had been telling myself. They easily could have been wrong.

“Listen,” Beverly said. “You know, this is a wonderful hospital, and now you know your options, so we can help you. You choose whatever is best for you. You and Dan have told us that the cost of in vitro might be out of reach for you. You need to know that no one here will ever judge you if you choose to terminate a pregnancy. We can help you with whatever procedures you choose.”

I kept swallowing. No words came.

“I’m sorry,” she said.

I walked into Dan’s office, where he sat swiveled in his desk chair, facing the door. His face was splotched, his eyes red and wet. My own face burned. Standing before him, I felt shame.

He brought me to his lap, but I couldn’t receive any comfort. I sat up straight. Instead of feeling the warmth of his thighs, I felt leg bones on leg bones.

Finally, his voice came through a small space. “What should we do?”

“I don’t know,” I said. By that point, we felt certain of one thing: We wanted biological children, and we wanted them to be healthy. Our options had boiled down to two: in vitro with preimplantation genetic diagnosis, or a natural pregnancy with the chance of termination.

“I’m so glad we found out now, before we got too desperate for kids,” I said, desperate instead to buoy my husband. “We have some time to think.”

“Twenty-five thousand dollars for IVF,” he said.

“I’m so sorry,” I said. But Dan wasn’t blaming me or looking back.

“More and more,” he said, “I think we should go the other route. It’s so much less expensive. We could do it sooner. We could get started.”

“That sounds so good on the surface,” I said.

“We’d just have to promise ourselves that our plan is our plan,” he went on. “We’d have to know ahead of time exactly what we’d do if the test came back positive.”

“It sounds so workable, Dan. But when I imagine being pregnant, carrying a child, I’m afraid I’d be unpredictable. I’m afraid I’d fight you. I’m afraid our plan would break my heart.”

I pushed myself up from his lap and went to the bathroom. Catching sight of myself in the mirror, I stared. I was different. For the first time, I saw tiny folds of dry skin on my arms and chest. The dark circles under my eyes were not, as a friend had suggested in junior high, a sign that I was “mysterious.” They were evidence that I was a carrier. I had always been grateful that the hair on my arms was blond and not too thick. Now, instead of seeing those hairs, I saw their sparseness: the spaces between them. Holding the back of my hand up to the light, I tried to see the signature mosaic pattern in my pores. I tried to imagine how the ridges could be deeper in my fingerprints. Yes, we are all special, I thought. They take great pains to teach us that. But we are not all perfect. I looked in the mirror, learning myself all over again.

Bonnie J. Rough holds an MFA from the University of Iowa. Currently a Bush Artist Fellow, she has taught at The Loft Literary Center and is also a trained birth doula. Her writing has appeared in The Sun, the Modern Love column of The New York Times, and elsewhere. She has traveled extensively and currently divides her time between Amsterdam and Washington State. Carrier is her first book.

Bonnie Rough’s coming to Portland in May:


Thurs May 19, 2010 at 7:30 pm

Annie Bloom’s Books

7834 SW Capitol Hwy 

Portland, OR 97219

503-249-0053