This article is a chapter from the book Perfectly Human: Nine Months with Cerian.
The doctor’s cheery voice gave way to a clipped monotone. He left the room and returned with a female technician. I assumed he was simply inexperienced at doing ultrasounds and bristled with irritation as the woman redid everything he had just done. Then the woman put her hand on my arm and said the words that every expectant mother hopes she will never hear: “I am so sorry, there is something wrong with the baby. We need to fetch the consultant.”
“But there can’t be,” I responded immediately. “I saw the face. The baby looks fine to me.” She shook her head and squeezed my arm. I went cold all over.
The consultant sat down beside me. Using the cursor and his finger for reinforcement, he highlighted different points of the tiny person inside me and murmured incomprehensible numbers. “I have to tell you, Mrs. Williams, this baby will not live. It has thanatophoric dysplasia, a lethal skeletal deformity that will certainly result in death shortly after birth. The chest is too small to sustain the proper development of the lungs.” A pause. “I suggest you come back with your partner in the morning and we will talk further about what you want to do.” A few minutes later I found myself in a side room with a second consultant. Only now did I understand what was meant by the phrase “what you want to do.” I listened while the doctor suggested dates for a termination.
“It’s the kindest thing to do, isn’t it?” I said to Paul that night after our two older daughters were in bed. Once I would have been quick to register my opposition to abortion. Now I was shocked to find that the only thing I wanted was to get the fetus out of my body as quickly as possible. We knew that a stark ethical principle was not enough to carry us through the rest of the pregnancy without hope; it was not enough to enable us to cope with the chance of watching our baby die in pain. Paul suggested we pray.
I can only say we both felt God speak a message to our hearts as clearly as if he had been talking with us in person: Here is a sick and dying child. Will you love this child for me? The question reframed everything. It was no longer primarily a question of abstract ethical principle but rather the gentle imperative of love. Before we finished praying, the chasm between the principle and the choice had been filled. As I lay down in my bed that night I realized the decision had been made.
What I did not anticipate in making this decision was the anger that it would provoke in some. One university medic presented the moral arguments in favor of abortion in a robust fashion: “To fail to abort in the case of proven fetal abnormality is morally wrong because in doing so one is deliberately bringing avoidable suffering into the world. It is an ethical imperative to abort in the case of suboptimal life.”
I felt like an undergraduate chastised for a weak line of argument in a badly written essay. I knew his words were not intended rudely or personally – they never are at Oxford – and although I tried only to muse on his argument with the distance of theory, it still kept me awake at night. I knew there was something wrong with his claim. But I could not, as yet, find a defense, and the force of my colleague’s case led me to consider whether I was, in fact, being selfish in prolonging the baby’s life. The word “suboptimal” rang in my head for days afterwards.
We knew that a stark ethical principle was not enough to carry us through a pregnancy without hope.
Silently, I formed a counterargument. My medical colleague’s argument, along with all the practices I had been pondering, presupposes a particular definition of normality, of health, and of quality of life. But what happens if the definition on which this argument rests is dubious? Whose definition of normality is it anyway? And on what basis is quality of life assessed? What is a normal person? Do normal people have a certain intelligence or skin color? Normality is a relative scale with no accepted criteria in all cultures. At one end of this relative scale we place people who are restricted by intellectual functioning, illness, age, or accident. And at the other end of this scale we place people with efficient minds and bodies. By this definition each of my three children sit at different points on the normality spectrum. Could I as a parent who loves them equally decide which one of them was most valuable, or worthy of a place on the planet?
And what happens if you can’t choose, if you can’t make decisions for yourself, if you’re stripped of agency unexpectedly, through illness or disability? Does this make you a sub-person or a non-person? Are you a pre-person before you achieve anything? And if you are born with no talents and you cannot achieve the proper formation of the body in the womb, does this mean you are not a person?
We named our third daughter Cerian, Welsh for “loved one.” Cerian’s life ended in the hour before she was born. At that moment the presence of God came powerfully into the hospital room. It was unlike anything I have ever experienced, before or since. Weighty, intimate, holy, the room was full of God. Everything inside me stilled; I hardly dared breathe. His presence was urgent and immediate and I knew with certainty that God had come in his love to take a tiny deformed baby home to be with him. There would be no painful bone crushing for Cerian, only the peaceful wonder of God’s enfolding presence.
Cerian’s life ended an hour before she was born.
When I first found out about Cerian’s deformity and made the choice to carry her to term, it felt like the destruction of my plans and hopes. It went against what I wanted. It limited me. But it was in this place of limitation that God showed me more of his love. Up until this point, the clamor of my desires and wishes had made me like a closed system centered in on myself, on my needs, flaws, and attributes. My life, even at times my religion, had revolved around achievement, reputation, and winning respect and approval from others. I had busied myself with perfect home, perfect children, perfect job, all the things I wanted. I knew I had lost something deep and precious, but I didn’t know what it was. And the more I felt the lack of it, the harder I tried to find it through effort. During the nine months I carried Cerian, God came close to me again unexpectedly, wild and beautiful, good and gracious. I touched his presence as I carried Cerian and as a result I realized that underneath all my other longings lay an aching desire for God himself and for his love. Cerian shamed my strength, and in her weakness and vulnerability, she showed me a way of intimacy. The beauty and completeness of her personhood nullified the value system to which I had subscribed for so long.
Three years after Cerian died I was invited to address an international medical conference convened to discuss the effects of prenatal testing policies on women in Western and non-Western contexts. For three hours I was bombarded with questions. It was clear that my views on prenatal testing were of incidental importance to the group; their interest centered on my experience as a mother finding herself in a situation of having to decide suddenly whether or not to terminate a pregnancy. My story exemplified the stark reality that prenatal screening places some parents in the position of having to decide the fate of their unborn children, not merely having the option to do so.
“What did it feel like to be placed in this position?” All the questions came down to this one in the end. This “necessity to choose,” hard though it may be for Western women used to making decisions about their own bodies, is even harder for women in parts of the Middle East, Africa, and South America. Where in a Western context the identification of male and female is in most cases a benign advantage enabling parents to name the little person they are about to welcome into the world and to furnish a new nursery accordingly, in some non-Western contexts revealing the sex places the unborn child at risk of termination on grounds of gender, and mothers at risk of intolerable pressure to abort females.