“The test results came back negative.” These remain six of the greatest words I’ve ever heard — and they came after two of the most agonizing weeks of my life.
They came after two of the most agonizing weeks of my life that began when my wife, who was 20 weeks into our first pregnancy, got a call from her ob/gyn. She returned with a hollow look on her face: The results from her final blood test showed a higher than normal likelihood that our baby had a serious genetic disorder.
Get an amniocentesis as soon as possible, our doctor said. But he warned us that, if the results came back positive, we’d have only a few days to make a decision on terminating the pregnancy.
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The odds that everything would be fine were still in our favor, but even the slim chance that your child is afflicted with a fatal infirmity is unbearable news. It felt like we’d been hit by a 2x4. My wife was already showing. She’d felt the baby moving and kicking. Now we had to confront the worst nightmare for expectant parents.
We didn’t know how serious the disorder could be, but our minds raced with questions. Would we want to bring a child into the world who would face insurmountable obstacles to a normal life? Where should we draw the line: Down syndrome, a more serious mental or physical infirmity?
My wife and I had gone through IVF to conceive our child. It’s an exhausting and expensive process and we weren’t spring chickens. Would this be our best chance ever to have a child? I was forced to confront my own long-standing moral ambivalence about abortion. These are the kinds of mind-numbing questions that confronted us as we waited to get an appointment for an amnio; and then the long weekend after the test as we waited to hear the results. We even had to attend a long-planned baby shower, even though we knew in the back of our heads there was a real possibility that all the onesies, rattles, and diaper pails we’d been given might be for a baby never born.
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We were lucky. Our daughter today is healthy, precocious, and headstrong. But the experience was for me a wake-up call to the complexity and difficult choices that are involved when women decide to terminate a pregnancy — particularly a late-term abortion.
For many families the news is far more grim, and if the state of Ohio and 17 other states had their way, the decision we faced would have been a legal question as well.
Earlier this week, the Ohio state legislature passed a bill that would ban all abortions after 20 weeks, with a very narrow exception for the health of the mother (since Ohio begins the clock with fertilization and not the traditional method of counting the weeks from the last menstrual cycle, it is in reality a 22-week ban). The rationale for the legislation is that at 20 weeks a fetus can feel pain, though there’s no serious medical evidence to support that conclusion. But the Ohio law would represent a significant shift from previous Supreme Court rulings that allowed abortions to occur before the fetus was “viable” (i.e., could live outside the womb), which is around 24 to 26 weeks. The 20-week ban is an attempt to chip away at Roe v. Wade and at a time when the Roe majority on the Supreme Court could be hanging in the balance.
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Abortions after 20 weeks are exceedingly rare. They represent only about 1 percent of all abortions. But according to public opinion polls, they are also the least popular. Many believe an abortion when a woman is already visibly pregnant and a heartbeat can be heard seems far more cruel and cavalier than a first-term abortion.
But in reality, these types of abortions can be among the most difficult ones. They happen when a pregnancy is far along and when the idea of giving birth is very real. For some women, a post-20-week abortion is a product of economic circumstance (for poor women it can take weeks to gather the funds for the procedure). For others, the delay can be because of a traumatic event or simply because a woman is unaware she is pregnant. But these situations also frequently occur with women and families who very much want to have children — someone like Katie Lyon. I spoke to her this week about her experience terminating a pregnancy.
Katie was married and in her mid-20s when she got pregnant. Eighteen and a half weeks into her pregnancy she had an ultrasound that found her daughter had spina bifida and a tethered spinal cord.
The choice facing them was not a simple one. In many cases, when fetal abnormalities are discovered this late in a pregnancy, the diagnosis can be severe — namely, that the fetus is simply not viable. But doctors told Katie that her daughter would have lived. “The question for us,” Katie told me, “is what would her quality of life have been?” Based on the nature of the disease, Katie’s daughter was 99 percent likely to live her life in a wheelchair. One website she consulted helpfully told her that “by the time a child with spina bifida goes to kindergarten they learn to catheterize on their own.”
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She and her husband wondered how they would care for a sick child. How they would pay the medical bills at a time before Obamacare, when there was no guarantee of health insurance for a preexisting medical condition. She wondered whether their young marriage could survive the challenge of caring for a disabled child.
Though Katie said she knew that termination was the most appropriate thing to do, “this is not a decision that anyone enters into lightly. You approach it with a very heavy heart. This is your child, and you want that child not to experience pain and suffering.”
My wife and I came to a very similar conclusion. As much as we wanted desperately to be parents, having a child who would experience such life-long pain seemed both cruel and selfish. But at the same time, to even make this calculation is heart-breaking.
Another woman I spoke with —Jeni Putalavage-Ross — told me of her decision to terminate a pregnancy after a fetal scan discovered that her unborn child would not survive. “We had already bought a crib, selected a name, and dreamed about our future together with our little girl,” she told me. But “my husband and I knew our joint decision to end my pregnancy was the best thing we could do for her. We protected her from pain and suffering.”
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Jeni, however, lived in Texas, which has a mandatory waiting period, so even after receiving her diagnosis and making the decision to terminate “we had to go home and wait and agonize about our decision while I could feel the baby still moving inside of me. It was torturous.”
The idea that any parent would be literally forced by lawmakers to bring a child to term — and make him or her suffer — seems almost subhuman. It’s a direct interference in what is often the most difficult decision that any parent will ever face. Yet, in Ohio and 17 other states that have passed 20-week bans, women who face the unimaginable decision of whether to terminate a pregnancy could be forced to do just that. The choice facing a family at these moments is hard enough; no government should go out of its way to make it worse.
Michael A. Cohen’s column appears regularly in the Globe. Follow him on Twitter @speechboy71.