Sometimes It’s Good Not to Have a Choice (Or What I Didn’t Know Didn’t Hurt Me)

Last updated on: April 26, 2012 at 7:40 pm by Amy Julia Becker

Sometimes It’s Good Not to Have a Choice (Or What I Didn’t Know Didn’t Hurt Me) 2012-04-26T19:40:43-04:00 Amy Julia Becker

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It sounds like good news. Researchers have developed a non-invasive test to detect Down syndrome early on in pregnancy. As this new test becomes widely available, it will replace current screening tests for Down syndrome. Any woman who takes the advice of the American College of Obstetricians and Gynecologists, who currently recommend screening for Down syndrome for every pregnant woman, will know definitively the chromosomal makeup of her fetus in the first trimester.

It sounds like good news. All pregnant women can receive more information about their baby earlier on in pregnancy. Most women will feel relieved to know that nothing is “wrong.” Those with a diagnosis of Down syndrome can begin to prepare for life with a child with a disability or choose to terminate the pregnancy and avoid the trauma of a late-term abortion.

We discovered that our daughter Penny had Down syndrome two hours after she was born. I was 28 years old. During my pregnancy, prenatal tests had suggested that she did not have Down syndrome. So when the doctors first gave us Penny’s diagnosis, I was angry. In my mind, Down syndrome was the one thing she couldn’t have, the one thing we had ruled out. And I was frightened, worried about Penny’s health and about our ability as a couple to “handle” a child with special needs. But even in those early hours in the hospital, my anger and fear dissipated when I held Penny in my arms. The abstract concept of a negative diagnosis made way for the positive reality of a baby with round cheeks and an upturned nose, heart-shaped lips and big blue eyes. Over the past five years, that abstract concept of Down syndrome has faded away altogether, replaced by the concrete presence of a little girl with challenges and dreams, bouts of whining and bursts of laughter, a little girl with pink sneakers and pink-rimmed glasses, a little girl who bugs me by asking “why?” about everything and who charms me by saying, “I’m happy to see you, Mom,” when I walk in the door.

I chose prenatal testing because I wanted information about who my child would be. But a prenatal diagnosis of Down syndrome couldn’t have given me what I wanted. A diagnosis gives the words “mental retardation.” It gives numbers and statistics. It gives a list of potential medical problems.

But Penny’s life is more than a list of medical concerns. No prenatal test could have told me that my daughter would love to sing but have troublecarrying a tune. Or that she would have a pitcher’s aim when throwing a ball but lack the coordination to play tennis. Or that she would love the color pink but show no interest in dressing up like a princess. When Penny was first born, I was afraid that her disabilities would make her less than human. Instead, her disabilities have exposed our common humanity.

Across the globe, there are millions of individuals with Down syndrome. Each of them, and each of the friends and family members who love them, have stories to tell. Very few of their stories focus upon health concerns or cognitive delays. Very few of them say anything about Down syndrome in the abstract. Almost all of their stories will be like ours—particular moments of triumph and heartbreak, rejection and bigotry, inclusion and joy.

News reports present the most recent advance in prenatal testing as an unequivocally positive step for women and children. Yes, an early diagnosis of Down syndrome offers a choice about whether to continue the pregnancy. And yet it does so via a narrative of problems and concerns rather than a portrait of an individual life, with all its limitations and all its possibilities. In the end, I’m glad I didn’t know that our daughter had Down syndrome until I was able to hold her in my arms.

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