Our son, Liam, is wonderful. You should meet this boy. He’s sweet, he’s funny and so bright! We brag about him to our friends. We don’t mention that nine years ago we considered aborting him.
At my 16-week pregnancy check-up, my obstetrician took a sample of my blood. Then she ran a test. Her colleague, whom I’d never met, phoned me with the results at 9:30 p.m. on a Thursday night.
“Your triple-screen results are in, and they are showing an increased risk of Down’s syndrome,” said Dr. Nancy O’Neil. Her voice was like a BB gun: pop, pop, pop. I motioned for my husband to mute the TV. I hadn’t chosen to get pregnant at age 30 out of longing for a baby to hold; I had wanted to avoid having “problems” more common in older mothers. Down’s syndrome would have topped that list.
But my body tested like that of a 38-year-old. My ultrasound, scheduled for two weeks out, was shot-gunned up to the next day. Dr. O’Neil told me I should strongly consider following that with an amniocentesis.
“Wait!” I said as she paused for breath. I wasn’t sure I wanted some high-tech test involving a long, slender needle piercing my abdomen. “Please, can we just wait on all this a few more days? We don’t know if we want to do amnio. We need to think about it for awhile.”
“You don’t have time to wait.” Dr. O’Neil sounded like a schoolteacher repeating a lesson for a distracted child. “You need to get the results of the amnio back before it’s too late.”
“To terminate the pregnancy. If you’re going to terminate, you have to do it by 20 weeks.”
I hung up, and my husband, Bill, said, “Don’t worry now. Let’s see what happens tomorrow.” After he went to bed, I sat up, staring at the TV for hours, distraught at what I might be carrying inside of me. If this was a Down’s baby, it wasn’t going to look like my baby pictures. It wasn’t going to think like me. I didn’t believe it would act like me. What would I do with a child like this?
There’s no question that, had I been married to a different kind of person, I would have planned to abort. Before becoming a mother, I believed that if I was careful and deliberate, I could manage my life and have everything. I could have the beautiful little girl and the handsome baby boy, the stylishly decorated home, the loving marriage, and the flourishing career — not sequentially, but simultaneously. Bringing home a Down’s baby would rip that canvas in two. The idea of such loss in control sent me into near panic. I wanted that baby gone.
But the decision wasn’t mine alone.
I’m Jewish, from a small, secular family in Los Angeles; my husband is Catholic, from a devout, extended family peppered among small cities in the Northeast. I marched for a woman’s right to choose. He attended a Catholic medical school where abortion was not on the curriculum. I once had a “Pro-Child, Pro-Choice” sticker on the bumper of my Honda Accord; he persuaded me to scrape it off before our wedding, so his family wouldn’t be offended when they came into town.
To describe Bill as anti-abortion, pro-life, would have been an exaggeration. He grudgingly conceded the occasional necessity of termination. But first he would look for another option. When we married, people whispered that it wouldn’t last. As Jay Leno launched his monologue on the night of my doctor’s call, I wondered if this pregnancy would prove those people right. I stopped looking at my belly then and there. I needed my space.
The next morning, Bill and I faced each other over the breakfast table.
My husband is a busy doctor who leaves home early in the morning and returns well after dark. At the time, I too boasted a frantic career. But as a newspaper journalist, my earning potential was one third of his — and that’s being optimistic. Whatever job sacrifices lay ahead were going to be mine. The brunt of any disabled child burden would fall on my shoulders.
“I need to get that amnio,” I said midway through my bowl of cereal.
In Bill’s family, women trust in the Lord and don’t take prenatal genetic tests. But he didn’t marry one of those women. “I could barely sleep last night, and I don’t think I’ll be able to sleep for the next five months and I’ll be so stressed and worried and–”
“Okay, okay,” he interrupted. “I know. I figured. We’ll do it.”
There are some arguments not worth having. We knew we might face a blistering battle over whether or not to keep this pregnancy. Better to keep the peace as long as possible. Bill shrugged and gave in — for the moment.
I don’t believe a person has to get an abortion to prove their pro-choice mettle. I don’t even believe a woman has to be willing to get one herself, should the occasion arise. That’s what the “choice” is all about.
Well, for three weeks in the fall of 1998, Bill and I learned all about choice. Choice was our daily companion — the drag in his step, the ache in my head, the knot in the muscle behind my right shoulder. We found it’s easier to talk about a choice than to make one.
I’d looked forward to the ultrasound since my first missed period, eager to get a glimpse of our incipient baby. When the time came, I told myself to look, but my head turned away from the screen.
For 30 minutes, the doctor and technician waved the ultrasound wand over my distended abdomen. Still, at the end, no one could tell us conclusively if our baby had Down’s.
We did learn were having a boy. This meant the fetus had a name: William Murdoch Howell IV. And a nickname: Liam, the Irish derivative we agreed upon years ago as a more palliative alternative to Bill, Jr. Not that we would refer to him as Liam for a long while. You don’t name something you might not be keeping.
The ultrasound was on a Friday. We had to wait until lunchtime Monday for the amnio.
The whole weekend, I tried not to ponder this: one out of every 400 women miscarries after having an amnio. This baby might be fine. And I might be about to kill him, just because I couldn’t live with the possibility that he wasn’t fine.
Before getting our amnio, we had to undergo genetic counseling. Bill and I arrived at the perinatal office promptly at 11 a.m., then waited for an hour to see the genetic counselor. In the meantime, we flipped through photo albums of healthy babies delivered by the practice. I wondered if these doctors ever delivered a Down’s baby. Would they put that picture in these peppy scrapbooks?
The genetic counselor looked comforting and familiar, like a college dorm mate I might have had. She had brown hair, soft brown eyes, and a gleaming ring on her finger from her wedding the month before. Her name was Julie.
Soon we were down in the muck of it with Julie, flipping through an abbreviated list of deformities and abnormalities they would test for. Julie downplayed the possibilities. But I imagined anew this child inside of me: his spine twisted, his head bulbous, his limbs missing.
We learned that an amniocentesis can tell you whether your baby has Down’s, but not how severe that Down’s will be. It couldn’t tell us if our kid would grow up just this side of normal, landing, say, in a group home with a paid, menial job, or spend his days unable to talk or feed himself.
Our amnio wasn’t for another hour and a half. Time for lunch.
At a deli near the medical offices, Bill and I sipped our soup in near silence, then returned early to the perinatal office. I was shivering on an exam table, the nurse swabbing alcohol over my exposed tummy, when the doctor breezed in, smiling and shaking hands.
Soon he set about poking my belly with the needle. I thought I might cry.
“Don’t be so nervous! This is no big deal.” He guided his needle through my uterus with the help of an ultrasound monitor. “Look at your baby,” he suggested, pointing to the screen. “Isn’t he cute?”
We were told it could be a week to 10 days before we’d have the amnio results back. We decided to think about other things. My friends called me. I didn’t call them back.
My mother-in-law called and meticulously discussed every conceivable subject, except the upcoming amnio results. I knew she prayed for me and her unborn grandson at Mass every morning.
My parents called daily from 1,200 miles away. They warned that a special needs child could crush my life. “I’ve talked to _________ about it,” my mother would say, referring to one of her many girlfriends. “And she agreed with me that you do not want to do this to yourself. Connie, you have no idea what you are getting into.”
She was right. I’d never even changed a diaper. But I did know one thing. Whatever choice we made, somebody would never forgive us.
A week passed, then two, and still no test results.
Unable to restrain myself any longer, I went online and looked up “Down’s syndrome.” I think I’d hoped that a Down’s baby would suffer enough misery that I could justify his early demise. Instead, I learned that Down’s children are happy, maybe even happier than me. The misery, if there was to be any, would be purely mine, of my own making.
I wasn’t used to making life-altering sacrifices for somebody else. But I’m also a person who has always prided myself on being there for friends and family, when someone needed me. And someone obviously needed me now.
I thought, Maybe my future won’t look like a Norman Rockwell painting. Maybe it will involve more hardship, more pain, more abnormality than I expected. I considered what Bill and I had to give a child: not just love, but two parents, a home, money, resources… Nobody was more equipped to handle this than we were.
Three weeks post-amnio, I got a head cold. My back hurt so badly I could only sit for 20 to 30 minutes at a stretch. Finally, one night, we sat down to have The Talk. Bill wanted to keep the baby, regardless of what the test showed. I wasn’t surprised. A day or two before, a patient had come to see him with her Down’s child. The boy was functional, though he clearly needed extra care. His mother clearly adored him. This, for Bill, was not only inspirational – it was a sign, maybe from God himself. We were going to have a Down’s baby and we should hold that baby tight and love him fiercely. Bill said he was ready.
I knew I’d never be ready. But I’d also realized something in the last few weeks. An abortion is not an eraser, wiping clean a messy chalkboard. An abortion is itself an incident, a thing you have to live with, long after it’s over. I imagined going through the rest of my life knowing this thing about myself: that I had denied somebody a chance to live because I couldn’t face the challenge of raising him.
I didn’t want to be that person.
And then there was my marriage. I realized that if I kept a Down’s baby for Bill’s sake, I could grow to resent my husband for saddling me, the primary caregiver, with such a tremendous responsibility. I could — but I probably wouldn’t. I would probably love that baby and soon be unable to imagine life without him. And my parents, the ones who urged me not to keep a Down’s child — I hoped they would adapt as well. Children tend to burrow their way into your heart, want it or not.
But if I insisted on an abortion, Bill’s mother would be heartbroken and bitterly disappointed in both of us. Bill, stuck in the middle, might be ridden with guilt. He might get angry. He might never forgive himself or me for the loss of that child. And then what? What if the abortion germinated in our happy marriage like a cancer, destroying it from the inside out?
There are some risks I just don’t take.
I told Bill I would keep the pregnancy, no matter what.
The next morning, I saw my doctor for my 20-week check-up. “You mean they haven’t given you the results yet?” she asked. The nurse put me on the phone with the perinatal office; the results came in the previous evening. “Your baby,” said the genetics counselor, “is fine. All the tests are normal.”
I staggered out of the office and down the stairs to the lobby. I called Bill and we both sobbed.
It was like we’d been living in someone else’s life for the past month and finally, our old existence was restored. At work, I felt Liam kick inside me and, for the first time in weeks, I was glad.
That was nine years ago. Liam began third grade this fall. He has since been joined by Eli, 6, and Sarah, 3. That means we’ve debated this same question two more times.
I’d like to say that we stuck by our principles and bypassed future prenatal genetic tests, since we planned to take a pregnancy to term, no matter what. But the truth is we’re more undecided than ever. We once had so many ideas about parenting — children should be seen and not heard, babies should not spend the night sandwiched between their mother and father — that have gone up in so many clouds of smoke. We now see that there is no right or wrong way to raise a child. We just keep doing it our way, and hope they turn out well.
And so, we’ve come to believe, there is no right or wrong answer to the question of keeping a Down’s baby. Some families would thrive; others would fall apart under the strain. We are stretched pretty thin as it is and frankly don’t know which category we would fall into.
No, the lesson we ultimately took from the nearly-Down’s episode was this: test aggressively and early. By the third pregnancy, we decided to do an even riskier procedure at 10 weeks, so that if we needed to abort we could do so under cover of a normal miscarriage.
That’s not to say we would have. We’ve also learned this from our children: you love them no matter what, and you always underestimate what you can handle. I’m not sure what we would have done if an unwanted result had come back either of those times. Life, especially life with children, continues to surprise us.
A choice is not only freedom. It’s a terrible responsibility.