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.
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.)
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.)
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.