Our Society’s Lack of Support for Babies With Down Syndrome Made Me More Pro-Choice Than Ever

Given proper medical and social support, I knew I would keep my fetus if it had a Down syndrome diagnosis. But I knew I personally would not be able to give that child a fair life, and that is my private choice to make.

[Photo: New born baby sleeping in a bassinet.]
We would’ve already been depending on the generosity and help of friends and family to afford a crib, a bassinet, and other basic features for the nursery. Shutterstock

It was a Friday when my partner and I got a call from the genetic counselor. She was contacting us with the results of the prenatal screening test we’d taken the previous week. Sunny blue skies hung over Silver Lake, and we were in a bakery on Sunset happily munching on pastries and listening to salsa music on a rare day off. I could barely hear the voice of the genetic counselor coming through the phone, but I understood enough.

We were told it was it was possible our fetus had Down syndrome. At my age, the probability is 1 in 100 — I was in the 1 percent for once, I later joked to a friend. I was told to drop everything and come in for a follow-up amniocentesis at 8 the next morning.

We began mentally and emotionally preparing for what a positive follow-up diagnosis might mean. After doing a cost analysis, calling our insurance to see what therapies they supported, and talking to friends and strangers with experience in this arena, we determined our freelance, tight-income lifestyle could not give a baby with Down syndrome the quality of life she deserved. We decided we would terminate if the amniocentesis also came back positive.

I can’t really explain to you the grief that we experienced at the anticipated loss of our fetus. It’s hard for me even now as I type these words to reenter that space of time. For a week and a half, we grieved. In public, I stayed calm—as I usually did in crises—but in the privacy of the car, I sobbed loud animal sobs, rocking back and forth in my seat. We’d been planning for a baby with such high hopes, and our families already knew she was coming. Some folks had already started buying us little onesies featuring dinosaurs, which my partner loved.

None of this changes the fact that I was ill-prepared to raise a baby with Down syndrome in our current society. A freelance writer, I made a little above minimum wage. We would’ve already been depending on the generosity and help of friends and family to afford a crib, a bassinet, and other basic features for the nursery. Relatively new to our city, I hoped to find a full-time job after the baby was a few months old, but the search might take a while. Where would we find the money and time to raise a child with Down syndrome?

Given proper medical and social support, I knew I would keep my fetus if it had a Down syndrome diagnosis. Watching videos of moms on Instagram playing with their joyful, beautiful babies with Down syndrome, I knew I could be a great mother if I had money for therapy, time to drive my child to daily appointments, and support from the government and my insurance. But looking at my nonexistent savings account, calling my insurance, and talking to friends whose family members had Down syndrome, I knew I personally would not be able to give that child a fair life, and that is my private choice to make.

This is a difficult decision for anyone, and there are a lot of complex issues involved. The voices of the disability community need to be clearly heard when it comes to genetic testing for disabilities and abortion. What is called an “abnormality” by my doctor should not be thus othered by our society—we need to change our language and our approach toward these genetic tests.

Children and adults with Down syndrome live just as worthy lives as everyone else. The problem is society doesn’t care enough to provide the support a child with Down syndrome needs. A parent of a child with Down syndrome frequently needs to pay for various kinds of therapy to help the child live their best life—speech therapy, physical therapy, occupational therapy. These therapies can cost hundreds of dollars an hour and last through adulthood, but medical coverage and government support often do not fully pay for them. Though the Individuals with Disabilities Education Act (IDEA) ensures free education through high school, these supplemental therapies are important. And complications can arise for many people with Down syndrome from the moment they are born, including heart defects, blood disorders and leukemia, autoimmune conditions, thyroid disorders, skeletal problems, and digestive problems that require a lifelong special diet. A small percentage of adults with Down syndrome are able to eventually live completely independently, but others must stay in assisted living—which can be expensive—or with family for the rest of their lives.

Just as we were finding out that our fetus might have Down syndrome, Republican legislators in states across the South and Midwest were starting their latest full-scale assault on Roe v. Wade. Their so-called heartbeat bills outlaw abortion as early as eight weeks, but make no provisions to pay for the care for people who have Down syndrome or other chromosomal irregularities. (Ironically, Georgia’s HB 481 is called the “Living Infants Fairness and Equality Act” in a state with wretched maternal and infant death rates—not surprising, considering Republicans want to further slash their services harshly in 2019). Have these legislators lived as a minimum-wage-earning person who has to support a child? Once again, the full financial, emotional, and physical burden is on pregnant people, while their freedom and privacy over their own bodies is restricted.

In those two weeks when my pregnancy hung in limbo, I was terribly sad and grieving. But to hear that a lawmaker wanted to tell me I have no choice but to carry to full term infuriated me. A pregnant person’s decision to terminate because of a genetic diagnosis is often a heartbreaking decision for her. Even if it isn’t, the abortion is her choice.

Education is key in dispelling abortion myths and defeating these laws. There are very few later abortions—1.3 percent of abortions happen at or after the 21st week of pregnancy, and less than 1 percent happen after 24 weeks. Most are medically necessary, like Margot’s. Abortion access is already scarce in many of these conservative states. Can you imagine the difficulty of working on your feet all day during your first trimester for minimum wage while throwing up in the restroom, only to be told by your manager you can’t have the two days’ vacation or medical leave you need to drive ten hours to the nearest abortion clinic? This is the reality for many women seeking an abortion.

My amnio and microarray results came back negative. Our fetus does not have Down syndrome, and we are hoping to deliver this summer. My heart feels full of expectation at the joy of seeing my baby for the first time, but if I had chosen to abort, I would not be a monster—I would be a woman who made an educated and private choice.

Pregnancy is one of the hardest and most taxing experiences I’ve ever weathered, and it has definitely decreased my work productivity as a freelancer. Birth control doesn’t always work. Raising a child is a choice. Everyone should be able to make that choice for themselves.

It’s vital that we have this choice over our own bodies. It’s not an exaggeration to say we are heading toward a new Gilead if we don’t work with every ounce of effort in our bodies to curb this assault on Roe v. Wade while simultaneously increasing access for everyone in this country who wants an abortion. We also need to simultaneously lobby for the government to support mothers who want to raise children with disabilities but don’t feel economically and emotionally supported enough to do so, instead of punishing women who make that difficult choice.