I Shouldn’t Be Forced to Give Birth to a Baby Who Won’t Live

I Shouldn’t Be Forced to Give Birth to a Baby Who Won’t Live

Our baby had a fatal birth defect. My federal health insurance plan refused to cover the abortion.

By Sarah E. Levin
Ms. Levin is a federal employee in Pennsylvania.
July 3, 2019


When I was 20 weeks pregnant, I and my husband learned during a routine ultrasound that our baby had not developed a major portion of her brain and never would. The condition, anencephaly, a type of neural tube defect that also stunts the growth of the skull, is terminal. If carried to term, our baby would be very unlikely to survive for more than a few hours.

One in 1,000 fetuses have this condition. We had no warning signs. No indications. No idea this was coming. This was a baby we had planned for. Just three weeks earlier we had told our 5-year-old daughter that she would soon have a baby sister. We returned home from the hospital that day and had to tell her that her sister was not coming any more. It was the first time she saw me sobbing, unable to speak.

We made the decision to terminate the pregnancy immediately. Then came the roadblocks.

I am a federal worker, and the Hyde Amendment, passed by Congress in 1976, barred my health insurance company from covering my abortion, just as it does for the millions of other women who are federal employees and for the millions of women who are federal Medicaid recipients. The amendment allows abortion coverage only if the pregnancy will endanger a woman’s life or is the result of rape or incest. Some states use their own funds to cover abortions that don’t fall within those bounds. Pennsylvania, where I live, is not one of them.

I’m lucky to be a federal employee in some respects. I benefited from regular prenatal care that was entirely covered by my insurer. I benefited all the way until I needed to have an abortion, when my health care coverage disappeared — at the time I needed it most.

Because I was in my second trimester, my abortion this past June cost $2,500 up front, not including anesthesia and pathology testing; anesthesia, alone, usually costs an additional $1,100. If I were unable to afford the upfront costs, as would be the case for many Medicaid recipients, I would have had to carry my pregnancy to term.

Lost in the conversation about forcing women to carry to term is any acknowledgment of the mental toll it can have, especially on those of us whose baby is likely to be stillborn, as about 75 percent of those with anencephaly are, or to die shortly after birth.

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What about my husband, who would also miss work, share in our trauma, and require his own mental health care to work through his pain?

And then there is my 5-year-old daughter, who would have to bear my grief while watching my pregnant stomach swell for another 20 weeks, and know that a baby is coming, but not one who would ever be able to be a sister to her.

I was fortunate enough, despite the financial burden, to still have a choice. Some states have recently passed laws banning abortions.


Still, the decision to terminate didn’t lead to the fast abortion I had hoped for. First, I had to sit through the state-mandated counseling as laid out in Pennsylvania’s Abortion Control Act, which is designed to dissuade me from having an abortion. The law also requires a 24-hour waiting period after “counseling” before the two-day procedure could begin. My hospital provided counseling only on Mondays at 4 p.m., so I had to wait a week. That’s a week in which I felt my baby kick constantly, a week in which my family began to mourn a loss that I hadn’t even begun to grieve for, because how could I when she was still growing inside of me?

Waiting one week for the procedure was cruel. Waiting 20 more weeks would have been intolerable.

This abortion wasn’t a choice. It was an urgent medical necessity.

Unfortunately, the courts have sided with the government when the amendment has been challenged. In 2002, a federal worker who also had a baby with anencephaly sued the government for its refusal to pay for her abortion. She won the first case but then lost the appeal. That means that the federal government continues to choose to subsidize the increased cost of delivering a baby with anencephaly as compared to ending the pregnancy. Deliveries typically cost $30,000 and $50,000, and many anencephalic babies are delivered by C-section, which is even more costly and carries significant risk to the mother. Then there’s the medical care required during the short span of life the baby may have (very few have lived past their first birthday).

This cannot be what we want for our federal workers, their families, and for Medicaid recipients who are some of the poorest and most vulnerable in society. My employer, the largest in the country, made an immoral decision to refuse me healthcare. It imposed restrictions upon me that were founded on a religious belief — not my own — that hurts my ability to be a productive public servant.

Sarah Levin is a public defender in Western Pennsylvania.