I wrote weekly letters addressed, “Dear future kid,” in a journal that I thought I might give to him or her someday.
I cannot claim to have been naive about poor pregnancy outcomes before my abortion. My husband and I had been debating for several years about whether to pursue adoption or try for a biological child when one of our friends had a uterine rupture at six and a half months pregnant. The baby died, and she nearly did too. During the emergency surgery that saved her life, they had to remove her uterus.
Most of the “cons” of pregnancy we’d contemplated previously were things like morning sickness, weight gain, and contributing to overpopulation. You might think our friends’ catastrophic loss would have given us even more reason to pursue adoption. However, we discovered that there are far fewer birth mothers seeking adoptive parents than there are people who want to adopt babies, and many of the latter are like our friends and incapable of having a living child on their own. We decided we should at least try the traditional route.
What I was certainly naive about was how many other ways there are for a pregnancy to end and how limited parents’ options can be if they get a poor prenatal diagnosis at the same point in a pregnancy that my friend’s baby died.
In June 2014, three months after I stopped taking birth control, I found out I was pregnant. I was terrified, but also cautiously excited. I found a website that generated a chart showing my daily odds of miscarriage based on my estimated due date and watched anxiously as the numbers inched down over the first trimester. At twelve weeks, my first trimester screening calculated the baby’s odds of having one of the most common chromosomal abnormalities at less than 1 in 10,000.
Despite my fears about the physical discomforts of pregnancy, I turned out to have it pretty easy. I had a little nausea and tiredness, but in general I felt fine. I was surprised to find I didn’t even mind the weight gain, and I loved feeling the first little burbles of movement and gentle kicks. My husband and I started sharing the news with family and friends. I wrote weekly letters addressed, “Dear future kid,” in a journal that I thought I might give to him or her someday, perhaps at the point he or she were thinking about trying to have children.
The first sign that something might be wrong was at the 18 week anatomy scan. The doctor who examined the images said the ventricles in the brain were measuring at the upper end of normal. He said he’d debated whether it was even worth telling us, but he’d spent enough time looking at it that he decided he should have me come back in a few weeks to make sure everything was okay. There was a 95% chance it was nothing. I asked about the 5% chance it was something, and he said at worst, that might mean our child would have some minor developmental delays or eventually need some extra help in school.
I was so sure everything was going to be fine that I went to the follow-up scan at 22 weeks alone and wasn’t even worried when they kept me waiting in the ultrasound room for ages after the tech had completed the scan. Instead, I was annoyed as I texted a friend I was planning on meeting for lunch afterward to say I might be late. Then the doctor came in, her face a mask of worry.
In the few weeks that had elapsed, my baby’s brain had grown enough that they could now see multiple abnormalities. The ventricles were now exceeding the normal measurement. They couldn’t see the corpus callosum that connects the two hemispheres, which sometimes is hard to see on an ultrasound, but the cavum septum pellucidum that sits above it was definitely missing. The wall of the ventricle was too thick and bright, which might indicate a bleed. Finally, although it was too soon to be sure, it looked like maybe the cortex was not folding quite right. She mentioned the word termination, which was what really brought home to me how serious these abnormalities might be. But when I asked what the prognosis was, she couldn’t tell me. If it were just the enlarged ventricles, she said, there might not be anything to worry about. Similarly, a missing corpus callosum alone could be fine—many people are missing their corpus callosum and don’t even know it. Together, the prognosis was not good. There was a good chance my baby would die before or shortly after birth or have moderate to severe cognitive impairments. How good of a chance? She couldn’t or wouldn’t say.
How do you decide whether or not to end your pregnancy when the range of possible outcomes includes everything from completely normal cognitive function to dying before birth, with no way of knowing which is more likely? They offered me an amniocentesis to test for chromosomal abnormalities and infection, and I said yes. They offered to schedule me for an MRI to see if there had been a bleed in the brain and confirm the absence of the corpus callosum, and I said yes. Yes to more information, all the information you can give me, anything you can do to help me know how to make this impossible decision. And they told me that I would have to decide soon, because the limit on abortion in our state was 24 weeks. After that, we could still choose to terminate, but we’d have to travel.
The soonest they could get the test results back and get me in for an MRI was the following week. I spent that week trying to prepare for the possibility of bad results, but instead all the tests came back normal. There was no sign of infection and the DNA micorarray showed no evidence of chromosomal abnormalities. With the MRI they were able to visualize the corpus callosum and found no evidence of a bleed. The diagnosis at that point was “isolated mild ventriculomegaly,” and they estimated there was a 70% chance our baby would be completely normal or have only mild developmental delays. Not the odds you’d choose, but they were good enough for us. We declined termination, and they scheduled another follow-up ultrasound for four weeks in the future to monitor our baby’s brain development.
At that ultrasound, when I was 27 weeks pregnant, they found that the ventricles had enlarged further. They downgraded our baby’s chances of normal cognitive function to less than 50%. Even more worrying, the cortex still wasn’t showing the appropriate signs of folding normally. They scheduled me for another MRI the next week, and that enabled them to make a conclusive diagnosis: our baby had lissencephaly, which means “smooth brain.” The condition had been mentioned weeks ago at the 22-week ultrasound where they first raised concerns about the cortex folding, but it was always one of the most remote possibilities.
Lissencephaly occurs in approximately 1 out of every 84,000 pregnancies, and the prognosis is universally bad: infantile spasms and seizures, failure to thrive, typically no cognitive development beyond 3 to 5 month milestones, problems swallowing and breathing, no head or limb control, and a maximum lifespan of 6 to 10 years with death often occurring before that. In some less severe cases, children with lissencephaly have more advanced cognitive ability and limb control and may learn a few hand signs or be able to smile socially. However, they told us outcomes on the better end of the spectrum were unlikely in our case, given the early presentation of the folding issues. Our baby would likely need a feeding tube and possibly a respirator and might not even be able to smile or visually track motion.
The weeks that had elapsed since the first sign of trouble had given us time to consider carefully what our criteria for termination would be, and we had already decided that even the best possible outcome in the case of lissencephaly was not good enough to justify bringing this baby into the world. A smile here or there and the ability to learn a hand sign for “yes” or “no” would not make up for years of seizures and choking on their own saliva, repeated bouts of pneumonia, and death in early childhood. It was too much suffering to make a child endure with too little upside. If we hadn’t gotten a diagnosis before birth, we would have had no choice but to let doctors perform all kinds of invasive surgeries, even if they knew our baby would inevitably die. It turns out you can’t refuse a feeding tube for a baby. Getting a prenatal diagnosis put the decision in our hands, whether we wanted it or not.
Ultimately, as impossible as it felt, I’m grateful we had the choice. I believe that some forms of misery are worse than death and that a merciful death is sometimes preferable to a natural one. I would refuse medical interventions for myself if I were facing the same prognosis. Our doctors told us they fully supported our decision and that they were sorry they could not perform the procedure. At my stage of pregnancy, there were only four clinics in the U.S. that would. We had to fly halfway across the country, rent a car, stay in a hotel for a week and pay $12,500 up front for the out-of-network procedure. On Tuesday, December 16, 2014, one day shy of 29 weeks gestation, a doctor stopped my baby’s heart. Three days later, I delivered her intact and still. The cost of the procedure was ultimately reimbursed by our insurance provider, but our travel costs were not. I’m grateful that we had the means to act on our values and dismayed that many people would not have that option.
After a year, I’ve come to realize that I’ll miss and love my baby forever, more than I would have thought it possible to love someone I never got to meet. I’ve moved beyond the most intense phase of grieving, but I’m still sad my baby was so sick and angry that we had to travel so far from home to do what we felt was right. However, I have no regrets and know that we made made the most compassionate and loving choice we could.