A reader writes:
Last January, at the age of 41, I conceived my first child, a child I have wanted all my life. At 22 weeks into the pregnancy, my partner and I went for a routine ultrasound at a clinic in Overland Park, Kansas, near our home in Lawrence. We and all the expectant grandparents were eager to find out the baby’s gender. Before the appointment, my mother wrote a quick email: “What time is your ultrasound? I'm excited!! Let me know what gender my "Grand" is! Love, Mum.xoxoxoxo”
Our appointment began jovially. The perinatologist and nurse joked about names, and at one point, the doctor called the baby a “little rascal.” As the ultrasound continued, the room grew quiet. The perinatologist scanned the baby’s head again and again. He finally announced, in a solemn voice, “I’m seeing some things in the baby’s brain that concern me.” Time stopped, and everything in the universe shifted. Holding my partner’s hand, I struggled to listen despite the thick blanket of grief that settled over the room.
The doctor continued, “The baby has holoprosencephaly. It’s a brain malformation in which the forebrain fails to divide. Most of these babies die before term. Those that are born have severe disabilities.” He finally took a deep sigh and started to deliver the especially delicate part: “I don’t know what your beliefs are but some people would terminate a pregnancy of this nature. Since you are 22 weeks along, you would have to go to Wichita for the procedure.” Everyone in the room knew this was shorthand for, “You would have to see George Tiller, the infamous late-term abortion doctor. No one else will help you at this point.” Numb, I asked to know the baby’s gender. He placed the ultrasound wand back on my stomach and read the grainy image: “It’s a girl.” We walked out of the clinic with blank stares and wept in the car.
At home we looked up the diagnosis. The first pictures we saw took our breath away: babies with only one eye, noses on their foreheads, severe cleft lips. We read the unfavorable statistics: Most babies would die before term. Those that didn’t would likely die shortly after birth. Few would live beyond a few years. They would have problems with every human function: feeding, sleeping, walking, talking. It looked like babies with HPE who lived would be subjected to endless medical procedures and have little quality of life.
Devastated and sobbing so hard that we could barely speak, we called George Tiller’s clinic. The woman on the other end of the phone was compassionate and gentle. We set up the appointment for the grueling week-long procedure. We would be required to undergo counseling. The process would begin with an injection to stop the baby’s heart and then a slow induction of labor. After a few days I would deliver a still baby, a baby that had kicked harder than ever since we received the devastating news.
We spent the longest weekend of our lives seeking the advice of everyone: our parents, women in my partner’s online fertility group, coworkers with expertise in developmental disabilities. And to everyone’s surprise, we changed our minds. A lifelong pro-choice advocate and feminist, and a person who was finally, after so many years of yearning, a mother, I simply could not stop the beating heart of this baby inside me. We decided that if the baby lived to term – a baby we named Alice in the course of the weekend – we would love her and get her the best medical care she could have.
Although my partner and I decided not to terminate a pregnancy deemed dire at best and fatal at worst, we did need medical care appropriate to our situation. Scientific progress – and some would even say the hand of God – has enabled us to detect severe disability earlier and earlier in a pregnancy. But in some cases, such as mine, a potentially fatal deformity went undetected until one day over the limit for the procedure to be performed in a reputable medical facility. We were left with an agonizing decision. To add insult to injury, we had to make it knowing that we would have to walk through protestors in Wichita, protesters who felt moved to yell at us without the slightest inkling of our particular situation. Those with unchecked emotional fervor should put themselves in our shoes: What decision is most humane when you may have created a life filled with almost certain suffering?
Without the few doctors in the U.S. like George Tiller, we would have felt even more abandoned by a country too busy posturing for political advantage to do the hard work of reconciling its moral beliefs with its equal desire for scientific progress. If we have learned anything, it’s that we have to start this discussion with the particulars of each situation. It’s not politically expedient, but it’s what could move our country forward on the issues of sex, life, death, and the role of science and medicine.