Ilene

It was the week before Mother’s Day.

I wasn’t worried. It was my third pregnancy. I was in my second trimester, and we’d already had all the routine genetic testing that assured us the baby was fine.

When I called the doctor’s office to get the results for the latest test, I was expecting to talk to a nurse who would tell me everything was normal. Instead, my doctor got on the line.

“Having to wait even 48 hours could have pushed me over the edge.”

“I need you to come down to the hospital right away,” he said. “Something in your latest screening concerns me.”

My husband rushed to the hospital to meet me. During the ultrasound later that day, the tech was trying to keep a poker face, but no one was saying anything—not even small talk. I could tell something was terribly wrong.

When the doctor finally came in, he told us the baby had anencephaly, a brutal condition where the brain grows outside the skull.

We were in shock—complete disbelief. There were a lot of tears. We asked if there was anything that could be done. The doctor was very direct. “The prognosis is not good. Even if the baby survives childbirth, this child won’t even have the brain capacity to feel your touch.”

Everything changed in an instant.

With the benefit of 12 years of hindsight, I think now that in some ways it was easier that the prognosis was so clear. Once we discussed it with the doctor, I told him I’d like to have an abortion as soon as possible.

Some people think there are “family people” and “those people”—the ones who want to kill babies. But it’s not like that, not when you have circled the due date on the calendar and pictured yourself holding the baby in a few months.

My doctor was able to get me an appointment to be seen the next day by a physician at the hospital who could perform second-trimester abortions. I would have the abortion the day after that.

When we went in, the doctor told us all about the procedure. I’d had a number of uterine surgeries before, so he wanted to use as little instrumentation as he could. I asked him to just please preserve my fertility if possible—I’d always imagined having three children.

We were very lucky to be living in New York at the time—our experience was a huge contrast to what happens now in parts of the country like Texas and elsewhere in the South, where state laws have imposed mandatory waiting periods and shut down most of the abortion clinics, necessitating long waits to get an appointment and long drives to even get to a clinic.

After waking up one day excited and thinking about baby names and going straight to learning that I had a baby “incompatible with life,” having to wait even 48 hours could have pushed me over the edge. Being visibly pregnant—with people coming up to me on the subway to ask how it was going—and knowing it wasn’t to be, it was too much. I had such relief that I was able to get the timely and compassionate care I did.

It was a very, very sad time for us. But the happy part of this story is that just over a year later, I gave birth to my now 11-year-old daughter—and now I can’t imagine our lives without her.

When I talk about my experience publicly, I am overwhelmed by how many people come up to me and tell me about having gone through a similar thing, but having not told anyone before because they felt ashamed.

Why should people be ashamed of a common and necessary part of health care—something one in three women go through? Why should people feel ashamed of having agency over their own families and their own futures?

The test I had that revealed my baby’s condition is a test that is recommended between 16-18 weeks. For a woman who has it at 18 weeks, who can’t get in to see a doctor right away or needs to save up for the care—she could easily be pushed past 20 weeks gestation before being able to have the procedure.

Yet federal legislation pending in the U.S. Senate seeks to impose a nationwide ban on abortion after 20 weeks for women in my situation—and the countless other complex situations that women are faced with during pregnancy. We must all act to make sure women’s individual reproductive care decisions remain in the hands of those most affected by them.