By Amy Silverman
When my daughter Sophie was a few days old, the pediatrician scribbled a name on a prescription pad and handed it to me. A geneticist. When you have a baby with a genetic disorder, they send you to see a geneticist. I didn’t think to ask why. I figured this guy would look at Sophie—maybe test her blood—and tell us all kinds of things, like how smart she’d be and whether or not we’d have more kids with Down syndrome. Sort of like a fortune-teller.
It took four months to get an appointment, and by the time we got in, I’d already figured out that those questions don’t have answers. I really only had one question left for him: Do people with Down syndrome ever have curly hair?
In our house, hair is a big deal. Specifically, hair that curls. When Sophie’s older sister, Annabelle, was a few months old, her straight brown hair fell out and she was bald. For weeks afterward, my husband Ray and I watched her head carefully for signs of curls.
Perhaps Ray and I are so obsessed with hair because both of us had transformations when we learned to let our curly hair be curly. For me that happened my junior year in college, when I spent a semester in London and got a spiral perm—going to the other extreme from my previous hairdo, which had required hours with the blow-dryer, round brush, and iron. Okay, so with the perm I looked like Dee Snyder from the heavy metal band Twisted Sister, but that was stylish in the late 1980s, and finally, I felt good about myself. I dated cute boys all summer.
Ray won’t tell me exactly when his mother stopped blow-drying his curly hair straight. I asked once, and he got a funny look on his face and said, “You’re going to write about this, aren’t you? No way am I telling you anything.”
No matter. When I met Ray, he had dark, curly hair and everyone told us how cute it was that someday we’d have a little baby with curly hair.
We did. By the time I was pregnant with Sophie, Annabelle’s hair had grown in and she had a full head of perfect blonde ringlets. Old ladies in Target would stop me to ask if I used a curling iron on my two-year-old’s hair. No, just an entire bottle of No-More-Tangles. When Annabelle’s hair was wet, it stretched almost to her butt. She loved to shake her curls. She knew they made her special.
But what about Sophie—so tiny in her carrier, with straight black hair and a feeding tube up her nose, chromosomally challenged and days away from open-heart surgery?
Would her hair ever curl?
Years later, I still can’t believe the words came out of my mouth as we sat there in the geneticist’s office. From the look on his face, neither could he, a sweet older man with a booming practice and a packed schedule. In the time it took us to get in to see him, Ray had done his own homework on the topic of Down syndrome. His side of our bed was piled with books; more than once, I’d caught him staring at baby Sophie—silently sizing her up next to whatever new fact he’d just discovered, hesitant to tell me much.
Before the doctor joined us in the exam room, we met with a genetics counselor who gave us some history. “Down syndrome was first identified by a man named J. Langdon Down in the seventeenth or eighteenth century,” she began, reminding me of the public relations people who call newspaper reporters to pitch well-worn story ideas, practically singing them off a script.
“Actually,” Ray said gently, “It was 1866.” After that, Ray did the talking, and the genetics counselor took notes.
After Sophie was born and we got her diagnosis, Ray and I took very different approaches, which is weird, since he and I are both journalists, each of us in the habit of soaking everyone and everything for information on any given topic. Ray jumped into his research, but I retreated into the bliss of ignorance, particularly for those first fuzzy months of Sophie’s life. When I was a little girl—and even now, sometimes—when I’d hear a noise at night, I would pull the covers over my head, confident that if I couldn’t see it, it couldn’t hurt me. Ditto for adulthood. When I had the chance to take the tests while I was pregnant (and even when they told us there was a better than average chance Sophie had Down syndrome), I didn’t. And now that she was here, I still didn’t want to know. I didn’t want to know what was lurking around the corner, in the dark.
Instead I focused on the day to day. I decided I could only live with my baby and learn to love her and get her what she needed. And even though she was just four months old, she’d needed a lot, so far—a feeding tube, therapy three times a week. Echocardiograms, rows of pill bottles, a mini-hospital set up in the nursery. Scariest of all, a few days after this appointment with the geneticist, she was scheduled for open-heart surgery.
I survived by taking deep breaths and focusing only on the immediate. If Sophie wasn’t going to be like the rest of us, if she wasn’t going to be like Ray and Annabelle and me, that was okay. I just didn’t want to know about it in advance.
Except for Sophie’s hair. I wanted to know about her hair.
The day before Sophie was born, I had an ultrasound. The technician never saw the hole in her heart, but she pointed out my baby’s hair, floating in the amniotic fluid. It was beautiful.
And so was Sophie when she arrived, right down to her full head of straight hair. As lovely as it was, however, I won’t say her hair didn’t cause a pang. Selfishly, instinctively, I wanted her to be just like us. And so, I wanted her to have curls. Not the kind you get from a perm or an iron, but real curls—snaggled-at-the-back-of-the-neck, need-to-be-coaxed-with-conditioner, on-the-verge-of-dreadlocks, don’t-touch-I’m-in-the-critical-drying-stage curls.
As we sat in the geneticist’s office that day, I had yet to read any of the books or surf the websites or talk to the parents whose names we were given regularly, but somehow I knew before I asked that Sophie’s hair would never curl, and I knew that there were so many things about Ray and me that I already saw in Annabelle that I’d never see in Sophie.
The doctor stared at me. Then he explained that people with Down syndrome do not have curly hair. “African-American hair might wave a little,” he said, “but otherwise, no.”
(It’s true that over the years since, I have encountered a few people with Down syndrome and curly hair – but it’s most definitely the exception to the rule.)
Sophie would never have curly hair. I have to admit that I felt a little cocky for having figured it out—but mostly, I just felt sad. And dizzy, both literally and figuratively. Having this baby hadn’t just thrown me off kilter; it had knocked me over and I couldn’t figure out how to get up. Not that you’d have known by looking at me. (I don’t think so, anyway.) I was going through all the paces that a new mother takes, feeding Sophie, clothing her, rocking her, keeping her alive. Cooing at appropriate moments. But I didn’t feel like she was mine.
And now it felt like she’d never be. The hair was a symbol of all the ways she would continue to be different from us. She wouldn’t love the books I loved, wouldn’t “get” subtitled art house movies or defend socialism to a roomful of capitalists, and she’d never have curly hair. I looked down at her, strapped carefully into her carrier in her sweet pink-and-white onesie with her straight hair, and knew what I had to do. There was no other option. I picked up the infant carrier with this foreign creature inside, and we went home.
This excerpt is from My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome (Woodbine House 2016).
Amy Silverman is managing editor at Phoenix New Times and a commentator for KJZZ, the National Public Radio affiliate in Phoenix. Her work has also appeared on This American Life and in The New York Times. Amy holds a master’s degree in journalism from Columbia University. She lives in Arizona with her husband Ray and daughters Annabelle and Sophie.