If I Knew My Daughter Had Down Syndrome, I Would Have Aborted Her – All Women Should Have That Right

The author, Hallie Levine, with her daughter, Johanna. (Photo: Courtesy of Hallie Levine)

By Hallie Levine

Ohio is poised to become the second state in this country to ban abortion because of a fetal diagnosis of Down syndrome this fall.  As a pro-choice woman who has a 7-year-old daughter with Down syndrome, I find this absolutely appalling.  

This is an issue that hits close to home for me: If I had had a prenatal diagnosis, I would have obtained an abortion. Today, I am beyond grateful that I didn’t. But I cannot ever in any circumstances imagine insisting others not have that right.

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Studies vary, but anywhere from 67 percent to 85 percent of women who learn their baby has Down Syndrome terminate their pregnancies, according to a 2012 University of South Carolina review published in the medical journal Prenatal Diagnosis. Ironically, I asked my doctor several times for an amniocentesis. She talked me out of it, emphasizing that the blood screening tests I’d taken boasted over a 90-percent detection rate. The uneasiness and anxiety I experienced throughout my pregnancy were blown off as first-mom jitters. (“Maybe you need to go on Zoloft,” the head of perinatology told me after I peppered him with questions during my 18-week ultrasound.)

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It turns out my fears were warranted: My daughter arrived a month early, with a shock of dark hair, a huge, lusty cry — and a diagnosis of Down syndrome. An hour after she was born, a team of specialists were in the delivery room informing me Johanna had an intestinal obstruction that would require immediate surgery, as well as a suspected heart defect. I just stared at them in absolute shock, thinking, “I never signed up for this.”

Levine and her daughter. (Photo: Courtesy of Hallie Levine)

Seven years later, I remember that day vaguely, as if it was the haze of a bad dream. Johanna (nicknamed Jo Jo) is the center of my world, and she’s doing great. But it was a rocky road to get where we are today, and while it’s a path I’m glad I’m on, I would never want to see a woman forced into it.

Those first few months after Jo Jo’s birth, I suffered crippling post partum depression: I knew I would have terminated if I’d had the prenatal diagnosis, which left me feeling incredibly guilty, and I was overwhelmed by the maze of doctor appointments and therapists that had become my life. Zoloft worked wonders, as did a strong support system; I was also lucky enough to be able to afford a nanny to come to our house to take care of Jo Jo so I could go back to work full time. (It’s also fortunate that I’m a freelance magazine writer, so I can work from home and schedule assignments around my daughter’s needs.)  

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There are many folks — some of whom are in the Down syndrome community — who look at my story and point to it smugly as a tale of a woman who thought having a child with Down syndrome would be her worst nightmare, but triumphed. But my relationship with my daughter was something that had to develop on its own; if I had had a prenatal diagnosis, but had been forced to continue the pregnancy like Ohio legislators want, it would have been a disaster.