The author, Hallie Levine, with her daughter, Johanna. (Photo: Courtesy of 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.
The worst thing you can do to a woman going through a crisis is to leave her feeling even more disempowered. One of the reasons I struggled so much with Jo Jo’s birth is because I felt instinctively something was “off” about my pregnancy, but was greeted with condescension and, at times, frank disdain by my doctors. As a result, when she was born, I became hyper vigilant, constantly questioning the medical professionals who took care of her because, after all, I had spent my pregnancy being told everything was just fine, when, in fact, it wasn’t. I watched my daughter hawkishly, obsessing that every twitch was a seizure and every heat rash was a subtle sign of leukemia. (Kids with Down syndrome have 20 times the risk of developing leukemia as a typical child.)
Legislation like Ohio’s, which strips a woman’s right to terminate a pregnancy because of Down syndrome, is the ultimate form of condescension to mothers. It sends the message that we’re hyper-emotional during pregnancy, that we can’t think clearly, and that the decision to have an abortion stems from misguided ignorance and fears and selfishness – rather than a genuine concern for the well-being of our unborn child. Over the years, since I’ve written candidly about my post partum depression, I’ve been contacted by many women faced with the heartbreaking decision of whether or not to continue their pregnancy. After talking to some of them for hours, I have to say: I’m so grateful I did not have to make that choice.
When the women ask, tentatively, how my daughter’s doing, I rave about her many accomplishments: Jo Jo reads, she loves swimming, and performs in an adaptive ballet troupe. At our local elementary school in the morning, after she gets off the bus, she’s greeted with so much enthusiasm by other kids and teachers as she sings and twirls her way to the classroom, you’d think it was Katy Perry roaming the school corridors. (As one of her therapists once noted wryly to me, “Jo Jo views her life as a Broadway musical, and she’s the star.”)
But I also try not to sugar coat the realities of raising a child like her. Groups like the National Down Syndrome Society have done an amazing job of education and outreach, and I think their positive message is one reason why, as a 2012 study found, termination rates are dropping. But while there are many inspirational people out there with Down syndrome— like Glee’s Lauren Potter and American Horror Story’s Jamie Brewer, or long distance swimmer Karen Gaffney — there are others who are non verbal or battling a dual diagnosis of Down syndrome and autism or struggling with Alzheimer’s. (Down syndrome can significantly raise the risk of dementia.) While Jo Jo has been in overall good health, she still has limited verbal skills and has been dismissed in the past by therapists and school personnel as “low-functioning” and not worth their time and effort.
When she was 3 years old, Jo Jo’s dad and I became embroiled in a legal skirmish with our old school district after their assessments placed her at the cognitive level of a 9-month-old; we ultimately prevailed but spent thousands of dollars on attorneys and independent evaluations. I’ve spent so much time fighting for my daughter, other parts of my life have been sacrificed in the crossfire: My career as I once envisioned it, my marriage.
At night, when Johanna’s asleep, I slip into her room and watch her, her blonde hair spilling over her pillow, her hands clutching her Barbies in a death grip. She yawns and curls up in a fetal position, slightly snoring, and I am filled with a surge of love for her that makes me realize that yes, I will do anything to help her thrive and succeed.
I will tell you what won’t help her, though: Legislation forcing women to go through with unwanted pregnancies in the misguided belief that it will advance her life, or the quality of life of other people with Down syndrome. That only comes through education and advocacy, lobbying for increased funding for programs for people with disabilities as well as for research for Down syndrome. (The National Institute of Health spent only $18 million on research for Down syndrome in 2014, compared to $188 million for autism and $562 for Alzheimer’s.)
As of right now, the only message the Ohio legislation sends to my daughter is that if she gets pregnant, she doesn’t have the right to make decisions based on what she thinks is in her baby’s best interest. And every woman — disabled or otherwise — has that right.