On Tuesday, the U.S. House of Representatives approved a bill that would ban almost all abortions after 20 weeks of pregnancy. The bill is not expected to pass the Senate, but it has been endorsed by the Trump administration.
Meanwhile, in Ohio, two pieces of legislature — Senate Bill 164 and House Bill 214 — would make it illegal to terminate a pregnancy for one specific reason: a prenatal diagnosis of Down syndrome. Though pregnant women would not be criminally liable, their doctors would be — anyone found in violation would face a fourth-degree felony and a revoked medical license.
Proponents say laws like this — Indiana’s version was blocked last year, and North Dakota’s passed in 2013 — are about protecting people with Down syndrome from discrimination, while opponents say they’re anti-abortion agendas disguised as concern for individuals with Down syndrome. Below, three women who received a prenatal Down syndrome diagnosis describe their experience and explain their thoughts on bills like these.
Lillian: After the termination, I was more angry than anything else.
On receiving a prenatal Down syndrome diagnosis. I don’t want to say a “checklist,” but we knew there were some disabilities and issues we would have been fine dealing with. This was not one of them. I have quite a few friends who have kids with significant disabilities, physical and cognitive, and watching their struggles made us not want to put our family through [that]. Long term, we didn’t want our then-only child to suddenly inherit a sibling as a sort of steward. It could have been not that bad, it could have been pretty bad. But we didn’t want to open it up to that range of things for our son to deal with.
Once we made the decision, that was when things got tricky.
On having a termination. It was incredibly difficult to find anyone who would perform even an early second-trimester termination — I discovered that Planned Parenthood isn’t allowed to. I even considered going out of the country just because that would have been easier than some of the things we had to go through. There was a four-week wait-list at our local hospital, where they were very compassionate but just did not have the staff who could do this.
After about a week, I finally got an appointment. The staff at the clinic was great, wonderful. But still, they had to go through all this required political theater: I had to watch videos and sign all sorts of forms before even getting started. Throughout all that, the Down syndrome diagnosis came up just once: I filled out one form about whether the pregnancy was unexpected or not. I explained what happened to the person filling out the form, and she told me it would just be recorded as a fetal anomaly. She said they deal with that fairly frequently because people in the second-trimester situation only have a few options.
There was supposed to be a 24-hour mandatory waiting period, but that turned into a 48-hour waiting period because the clinic, which was small, had such a backlog. Once that was over, I had to watch another horrible, infantilizing video — part of it was even animated — that assumes you don’t know what you’re doing or what’s happening.
On the day of the termination, I passed by people with signs to get into the clinic. The signs were the usual: Stop killing babies! A lot of images and messages where I was like, Hmm, none of this applies to me. The sentiment seemed to be, You have an unintended pregnancy because you’re a terrible slut. Or, All these people want to raise your perfect baby! I thought, Ah, I don’t know if that’s so true for me.
I don’t think a lot of those people are out there, raising disabled babies, or doing much other than their particular brand of virtue signaling.
After the termination, I was more angry than anything else. I was angry that it happened, angry at the hoops we had to jump through. I was sad, of course, but I knew we made the right decision for us.
Reaction to the legislation in Ohio. This bill makes me incandescent with rage. To have someone else decide how you can build your family or what your choices will be — it’s so anger-inducing, there’s almost not a way to categorize it. And it scares me that a bill like this could influence the way doctors influence their patients. I was given accurate information. I had the ability to make choices. No one tried to point us in a particular direction: They just said these are the facts, this is what you can look at. That was all. It’s crazy to me that could be taken away.
Suzanne: Termination was never really on the table for us.
On receiving a prenatal Down syndrome diagnosis. We found out at about 20 weeks, during the anatomy scan. There were a few markers on his ultrasound that pointed toward chromosomal issues. We were offered a NIPS test or an amnio, and we opted not to do the amnio — I know the chance of miscarriage with an amnio is very low, but I just didn’t want to take even the smallest risk.
Termination was never really on the table for us. This was a very wanted child, and I was almost five months pregnant. But before the diagnosis was confirmed, even, a genetic counselor asked if we’d continue the pregnancy. We just told her yes.
It took two weeks to get the results to confirm his diagnosis. We spent those two weeks doing research, reading blog posts and looking into our local Down syndrome organization. My husband was the one who got the call. He’s the one who told me. At the time, I would have used the word devastated; now, I think, Why?
Another thing I remember feeling about that time is very protective of my son. I wanted to do whatever he needed me to do. To get started, I reached out to some local moms whose kids have Down syndrome. I reached out to moms online. There’s an incredible, supportive community out there, for parents who have a child with Down syndrome. By the time I gave birth, my husband and I felt very prepared.
On having a child with Down syndrome. I think a lot of people associate Down syndrome with health issues. I thought we’d be going to the doctor all the time, that he’d be sick constantly. But that hasn’t been true for us; my son has only had a cold twice in his life. I was also afraid he’d be treated differently than other kids, or that people would feel sorry for our family. But that hasn’t been true for us, either — he goes to a regular day care. The teachers treat him like all the other kids, who love him, they give him a hug as soon as he walks into the room. My friends with “typical” kids don’t treat us any differently.
On the legislation in Ohio. When you use Down syndrome as an excuse not to give birth, the public view of my child is diminished. A lot of time there’s an assumption that children with Down syndrome are born because no one knew. But I did know. In a perfect world, everyone would be loved and valued for who they are. Should this bill be a law? I don’t know the answer to that. But if it’s the only way to make the diagnosis presented without any judgment or pressure to get an abortion, then yes.
Stacey Calcano: I think my personal view is pretty clear. His name is Carter.
On receiving a prenatal Down syndrome diagnosis. We took our three kids, who were 15, 8, and 9 at the time, with us to the 20-week anatomy scan. The sonographer said, “It’s a boy!” and we were all like, “Yay!” Then I saw her face and could tell there was something wrong. I mouthed to my husband to take the kids out of the room, and the sonographer said she wasn’t getting the view of the heart she wanted and was going to get a doctor. This being my fourth pregnancy, I knew when a scan was routine and they say they’re going to go get a doctor, it’s probably not something great.
We were able to schedule the fetal echo the same day, then met with a pediatric cardiologist. She explained our son had two different heart defects. She also said we might want to consider having an amnio because 50 percent of children with Down syndrome are born with congenital heart defects. I responded, which has now become a joke in our family, “But my baby doesn’t have Down syndrome.”
Before having the amnio, I had to sign these forms to have expedited processing because I only had three weeks. I didn’t understand, in that moment, what he was talking about. It was only later that I realized he was telling me I only had three weeks to have a termination. In New York, you can terminate up to 24 weeks.
The next morning my OB called me and told me what I feel like I already knew: Our son did have Down syndrome. I was devastated and could barely speak. I was crying, overcome with this huge fear of the unknown.
My husband was immediately concerned with what would happen if something happened to us, the long-term financial ramifications, the effect it would have on our other kids. But he never brought up termination. We never openly talked about terminating. For me, personally, I remember as soon as we knew we needed a fetal echo, I just kept thinking, He’s my son. He’s my son. Termination never crossed my mind as an option.
We spent the rest of that day crying and talking. Then the next morning I woke up feeling incredibly calm and at peace. I just looked at my husband and said, “I don’t know what this means, or what our lives will look like, but the decision to have children at all is sort of a crapshoot.” Then my husband said okay, then no more tears; we’re going to do this. I wish I could tell you I didn’t cry again after that, but I did.
On having a child with Down syndrome. Today, our life is very normal. Carter just started kindergarten. He goes to a community school, with his typical peers. He does horseback riding every Saturday. We go to movies, restaurants, the park. Our life looks like any other family’s. It just means that he takes a little bit longer to meet developmental milestones.
Carter did require a heart surgery when he was a baby, but the change in his health was instantaneous. He was only in the hospital about a week; his color was better, he was crying, active. Since then, we’ve had no major medical issues. He doesn’t have any of the medical issues that sometimes come with Down syndrome.
You just have no way of knowing what having a child with Down syndrome is going to mean — much like you have no way of knowing what’s going to happen with your typically developing child. When I have conversations with new parents, especially those who have other children, who get caught up in the spiral of Googling, I ask them if they invested that much of their time researching all the what-ifs with their other children. Of course they didn’t. If we all spent all of our time researching what could possibly happen to every child after they’re born — it would be an endless loop of anxiety-ridden grief.
On the legislation in Ohio. I feel like these bills are representative of politicians using children like my son as political currency, without any thought or concern for quality of life, once they’re actually born. Bills like this make me really angry. They’re very much pro-birth bills; they have nothing to do with actual life. Many times they’re introduced by the same politicians and supported by the same conservative groups that are constantly fighting to make cuts to things like Medicaid, to gut social services across the board. That’s infuriating to me.
It’s a very controversial view, in parts of the Down syndrome community, for me to be pro-choice. I’ve taken part in some pretty heated discussions because I will say to people, “I think my personal view on termination after a prenatal diagnosis is pretty clear. His name is Carter.” This is the decision I made for me and my family. My decision should not dictate the decision that someone else makes for their life, for their body, for their families. Does it break my heart when people I’ve been in touch with ultimately decide to terminate? Sure. It’s heart-wrenching for me. But I refuse to judge people for making a personal decision. Their decision is no reflection of my child or people with Down syndrome. It’s their personal choice.