Up the Down Staircase

A New Times writer tells one family's unique story about life with Down Syndrome, and then shares her own

Before Sophie, the only thing I knew about Down syndrome was that it's called "Down syndrome," not "Down's syndrome," because once, years ago, I overheard a heated hallway debate at work between two editors. I never watched the show Life Goes On. I ignored the retarded clerks at the grocery store; they made me nervous and sad.

I constantly imagine that bad stuff is happening to me. Always have. I started preparing for the end of the world when I was about 4. I'm the woman sitting next to you on the airplane clutching the armrests, preparing to die. I am positive that, right now, as I sit at my kitchen table at 4:50 a.m. writing this, a rapist will sneak through the back door.

Courtesy of the Huff family


Photographs by Peter Scanlon

But I never imagined Sophie. After an early miscarriage and a round of Clomid, my husband and I got pregnant with Annabelle. We freaked out when a blood test during pregnancy revealed that the baby might have spina bifida, but an ultrasound eased our fears, and everyone talked about how that blood test (called an AFP) always comes back false-positive, particularly if you're having a girl. So when I was pregnant with Sophie and that same test came back a little high on the Down syndrome scale, I wasn't too worried.

The nurse practitioner from my OB/GYN's office called to say the blood test showed that my chances were 1 in 214 for having a baby with Down, as opposed to 1 in 219, the average for a woman my age, 36. She wanted to schedule an amniocentesis -- a test in which a needle is used to remove amniotic fluid from the uterus -- right away.

In just the two years that have passed, prenatal genetic testing has advanced to the point that you can find out in the first trimester with pretty good certainty whether your unborn baby has Down syndrome. But an amnio is done well into the second trimester. At the point I was at, I would have been considering a late-term abortion if I had decided to end the pregnancy. And there's a risk of miscarriage with an amnio.

I've always been pro-choice, but I've never had to choose. I could feel Sophie kicking inside me. I called my husband. His answer was immediate.

"Why would you get an amnio?" he asked. "It's not like you'd get an abortion just because our baby has Down syndrome."

And instantly I knew he was right.

I didn't think about it again until I looked around in the recovery room -- groggy from the extra drugs I'd demanded after my C-section -- and my husband was asking the nurse if she thought Sophie looked like she had Down syndrome. It was hard to tell from her squishy newborn face.

The nurses on the maternity floor debated the matter for an entire day while we waited to see the pediatrician, a man we'd never met. He popped into the room and immediately calmed us down. "I know the nurses say you're worried about Down syndrome, but I'm all but certain she doesn't have it," the doctor (who had come highly recommended) said. "We can do a blood test, if you want."

Sure, why not? They poked Sophie's head and told us it would take three days to get the results.

The good news, the pediatrician added, after putting his stethoscope to Sophie's tiny chest, was that her heart was definitely okay. And then he left.

We kept our worries from our families and friends, instead focusing on each new nurse who came into the room. Pretty soon, none of them were meeting our eyes.

Three days later, the pediatrician was back. He wouldn't meet our eyes, either. He told us Sophie had Down syndrome, and then he left.

My husband and I sat on the hospital bed, quiet, not looking at each other. Finally, I announced that I had ruined our lives. I opened my mouth and sobbed like I had never sobbed before. I felt like my whole body was crying, especially my brain. I don't think I've ever cried like that before or since.

I looked at Sophie, asleep in her hospital-issued plastic baby bed, swaddled in a striped blanket. She looked a little jaundiced but, otherwise, so normal. We picked up the phone and called our parents.

I think all the time about what my mother said, shortly after she heard. "I'm not worried about Sophie," she said. "I'm worried about Amy."

When Annabelle was Sophie's age, my husband and I used to fight each other to get to her crib each day, to "steal the morning smiles." She was a happy kid, but it's not like she smiled all day. Sophie does. Go to the bathroom and she'll greet you on your return like you're just back from the grand tour of Europe, giggling and waving and blowing kisses. Sophie's so fucking happy that it pisses me off that you need to have a genetic disorder to be that happy.

My mother was right. (There it is in print, Mom, the words you've always wanted to see.) Down syndrome has been way harder on the rest of us than it has been on Sophie, at least so far. I hope it always stays that way.

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