Who's Afraid of Down syndrome?
(originally published in Machiavelli for Moms, 2013)
The first indication that my baby might have Down syndrome came a few days before Mother’s Day in 2005 when I received the results of my first trimester prenatal screening test that came back with a statistical risk of 1:4 that the fetus I was carrying had a chromosomal anomaly.
Based on my age at the time, the risk should have been about 1:180. I was shaken by the results, but didn’t worry too much, assuring myself that the test had a notoriously high rate of false positives. Still, I had to decide whether to have an amniocentesis, a minimally invasive prenatal test which carries a 1:200 risk of miscarriage but gives a definitive diagnosis.
For more than a month, I struggled with the decision, terrified of the possibility of miscarriage. Yet, at the same time, I had a deep maternal instinct that my baby did have Down syndrome. Something about this pregnancy just felt different than my previous one, which made the decision much more difficult because I knew that if I opted to not take the test, and my baby did have Down syndrome, I would be depriving myself and my husband of critical medical information upon which to base the next parental decision: whether to have an abortion.
Between weeks 11 and 19, I read everything I could find on Down syndrome. I went on the Internet. I read books, blogs, and medical journals. And most of what I learned was disturbing: that Down syndrome is associated with a variety of medical problems and varying degrees of cognitive impairment, from moderate to profound.
I also found studies which indicate that about nine out of every ten American women who learn that they're carrying a fetus with Down syndrome choose to terminate the pregnancy.
This statistic raised a whole new set of fears: why are so many people afraid of Down syndrome? Do the presumed burdens and "defects" associated with the syndrome almost always justify abortion? And if I choose to not have an abortion and my baby does have Down syndrome, will I be viewed by society with prejudice, pity, or even scorn? “Why didn’t she just have an abortion,” some people might say disapprovingly.
Beginning in week 20, I began to feel my baby kick, and finally decided not to have an amniocentesis for the simple if selfish reason that I didn't want to put myself in the position of playing “god” and making a decision that I knew I would regret for the rest of my life, regardless of how devastating the alternative might be or what burdens it might place on my family and me.
At that point, I let go of my fears and, for the remainder of my pregnancy, tried hard not to think about the “What ifs.” I relaxed even more as each bimonthly ultrasound didn’t reveal any markers for Down syndrome, and, as the last weeks of my pregnancy slowly progressed, I began to feel more and more confident that the screening test was, in fact, inaccurate. "All of this anxiety will be forgotten as soon as I see my baby," I assured myself.
On November 15, I went in for my biweekly ultrasound. By then, the appointments had become routine, but when the sonographer fell silent and left the room without saying a word, a wave of worry washed over me.
Moments later, the perinatologist entered the room, silently studied the grainy black screen, then said matter-of-factly, “Your amniotic fluid is dangerously low. You’re going to have this baby right now. Go straight to Labor and Delivery, and I will call your doctor.” Then he exited the room as quietly and unceremoniously as he had entered.
“What?” I thought, in denial and shock. “I’m not ready to have this baby. My bag isn’t packed. I have work to do. And I have to pick up my daughter at three o’clock!”
As I got dressed in a daze, I glanced at the screen and saw that my baby’s long bones (the femur and humerus) were measuring at 33 weeks. But I was in my 37th week! That was four weeks behind! It was then that all my fears about Down syndrome came rushing back over me. From months of obsessive research, I knew that “shortened long bones” were a physiological marker of Down syndrome.
As I headed toward the hospital, I thought, “Today will either be one of the happiest days of my life or one of the most devastating, and I will know which one in a few hours.” This sense of finality lent some relief to an otherwise terrifying situation. There would be no more tests to take. No more weeks left to worry about things I couldn’t control. My baby would soon be born, whether or not she had Down syndrome.
My husband, Eric, arrived in the operating room a few minutes after the epidural was administered. After the blue screen was put up, I felt a few tugs, then saw our baby being lifted up and her umbilical cord cut.
As Katie let out her first cries of life, Eric excitedly grabbed his camera and began snapping photographs.
“Is she okay?” I asked, afraid of the answer.
“She’s beautiful!” he exclaimed, clicking more pictures.
“Maybe she is okay,” I thought, and, for a moment, my spirit soared. But my hopes were shattered when I heard the neonatologist whisper, “Did she have an amnio?”
“No,” my obstetrician quietly replied.
“Why would she ask that?” I panicked. No one had asked that when my first daughter was born. But nothing else was said. My doctor stitched me back up, congratulated me, and then quietly slipped out of the room.
More than an hour passed, and no one said anything about Down syndrome. But still, I was filled with a sense of doom. Then a nurse brought Katie to us, swaddled tightly in a pink flannel blanket and tiny white hospital cap.
As Eric gently cradled her in his arms, I studied her face with clinical detachment. Her eyes slanted upward, her tongue occasionally thrust out as if it was too large for her mouth, and her face looked somewhat flattened.
But, still, no one said anything. The nurse sat with us for another hour, chatting about trivial matters and casually laughing with the hospital staff. I just lay there, silently shaking, waiting for the other shoe to drop.
When the sky outside began to darken, the neonatologist entered the room. She had dark brown skin, darker brown eyes, and glided silently across the room like a shadow. To me, she looked like the Grim Reaper.
When she reached the edge of my hospital bed, she looked down at me for a moment, then uttered that one simple sentence that changed my life forever: “Your baby shows signs of Down syndrome.”
And that was it. The words had finally been spoken.
As I watched the Grim Reaper’s mouth move, spewing out words like “possible heart defects” and “mental retardation,” I looked at Eric and literally saw the color drain from his face, a face which, just a few moments earlier, had been flush with happiness and pride and excitement about our new family life. But now, he just sat there, silently processing this devastating information.
When the Grim Reaper stopped talking, I heard Eric quietly say, “Okay.” Then I turned my face toward the wall and felt a single warm tear slowly roll down my right cheek.
After that, everything got blurry, and I felt as if I was watching myself in a movie. I could see myself from a distance, lying in the hospital bed. I could see the Grim Reaper standing next to me. This is not my life, I thought. This is not happening to me. It’s happening to another version of me.
I later learned that this phenomenon is a psychological defense mechanism that the brain employs to dissociate itself from situations that are too devastating to immediately process or accept. It’s as if the psyche temporarily disassociates itself from itself. Hence, the feeling of being outside of oneself, watching one’s self.
I will never forget that moment, because in that moment, everything in my life changed. Before Katie was born, I led what I felt was a very charmed life. But now, it seemed, tragedy had struck. My luck had finally run out.
As I lay in the recovery room, not wanting to look at or hold my baby, I felt as if my world was falling apart. My life, as I had known it, was over. How would this affect my daughter? What would it do to my relationship with Eric? And how would I cope?
When I finally looked at my baby, I was overwhelmed by intense feelings of grief, fear, revulsion and shock. When Eric asked if I wanted to hold her, I shook my head and quietly said that I couldn’t because my body was still shaking too hard from the epidural. But that wasn’t true, and I knew it. I just didn’t want to hold her. Holding her would make her real. Holding her would make her mine. And I did not want her to be mine. I wasn’t ready to come out of my dissociative state.
After a few hours, the reality began to sink in, and I knew that we had to tell our family that our baby had Down syndrome. I also knew that I couldn’t say those words without sobbing, so Eric called my parents for me.
My father, a very wise and rational man, was silent for a while, then, with a quavering voice, gently said, “It doesn't matter.”
My mother, in denial, quickly offered, “Maybe the doctor is wrong.”
Most people, however, simply said, “I’m sorry,” which are the most painful words of all to hear when you have just had a baby.
Thankfully, Katie passed all of her medical tests, and so, two long days after she was born, she and I were released from the hospital and I went home with a baby I didn't want. I wanted a baby, just not this particular baby.
I am, of course, very ashamed to admit this. But that's the truth. That's exactly how I felt. And I have since learned that that's how some parents of babies with Down syndrome and other congenital anomalies feel in the first few days and weeks immediately following the birth, especially if they didn't learn of their baby’s condition prenatally.
For me, the first few months of Katie’s life were agonizing. I did not bond with her. I did not feel love for her. And I cried all the time, especially in the middle of the night when I was breastfeeding her or changing her diapers, because I felt like I was taking care of someone else’s baby. And because I wished that she was someone else’s baby.
Being alone in the house with her was also hard. But going out in public was even worse. Wherever I went – the grocery store, the mall, the park – all I saw were happy young mothers with their beautiful, “normal” babies. Occasionally, a happy, young mother would look at Katie and smile uncomfortably, then glance at me, with obvious pity, then turn away, not knowing what to do or say. Because these social exchanges were so painful, I began covering Katie’s stroller with a blanket so no one could see her.
Then, when Katie was four months old, something happened that changed me forever as her parent: she contracted Hib (Haemophilus influenza type B) disease, a rare form of bacterial meningitis that, before the advent of vaccines, was deadly in about one out of every ten cases.
We rushed her to our pediatrician, who told us to go straight to the Children’s Hospital, where she was taken from my arms and rushed to the Pediatric Intensive Care Unit to be given a spinal tap.
The next morning, the pediatric infectious disease specialist told us that intravenous antibiotics might cure the infection, if we had caught it in time, but they wouldn’t know for 72 hours. And so I spent the next three days and nights terrified that my baby, who I thought I didn't want, might die.
As terrifying as that week was, it was also profoundly transformative because it was then that I finally stopped crying for myself. The tears that I shed were no longer for me. They were for Katie – because here was this beautiful four month old baby girl, who had just had a spinal tap, was battling a deadly infection, and was hooked up to an IV for a week, but still woke up every morning smiling.
From that week on, I began to see Katie for who she is: a precious little girl. Like other little girls, she gets cranky when she’s hungry or tired, loves pizza and chocolate chip cookies, and likes to splash in the bath. For too long, all that I saw when I looked at my daughter was Down syndrome. Now, what I am finally able to see is my beautiful little girl.
I’m a lawyer, historian, and journalist who holds a Ph.D. in history from UC Berkeley. My most recent books include Machiavelli for Moms (Simon & Schuster) and Forgotten Crimes: The Holocaust and People with Disabilities, and my first children’s book will be published by HarperCollins in 2018.
I'm also a ghostwriter for a #1 New York Times bestselling author with more than 25 million copies in print and my work has appeared in the New York Times, the Los Angeles Times, The Wall Street Journal and other publications, including USA Today, Newsweek, Parade, Forbes and The London Times.