One mother's story of love and loss, and the impact of a child's short life

One mother’s story of love and loss, and the impact of a child’s short life

One mother’s story of love and loss, and the impact of a child’s short life

(Credit: Pixabay.)

Sarah Williams discovered her unborn child had lethal skeletal dysplasia, and birth would be fatal. She and her husband decided to carry the baby to term, a decision that shocked medical staff and her professional colleagues.

[Editor’s Note: Sarah Williams is a research professor in the History of Christianity at Regent College, and a specialist in the field of nineteenth and twentieth-century cultural history. While teaching history at the University of Oxford, a hospital scan revealed her unborn child had lethal skeletal dysplasia, and birth would be fatal. She and her husband decided to carry the baby to term, a decision that shocked medical staff and her professional colleagues. She chronicled the story in Perfectly Human: Nine Months with Cerian. She spoke to Charles Camosy.]

Camosy: Can you tell us a bit about your background, especially as it shaped your view of what mattered in life before Cerian came along?

Williams: Before our encounter with Cerian there were two primary elements that shaped my day-to-day life – my family and my work. I had been married to Paul for fourteen years and we had two wonderful daughters, aged eight and five. I was Fellow and Tutor in Modern History at the University of Oxford where I was also educated from the age of eighteen. My daily life consisted of taking care of my family, teaching students British and European history, and writing on religious culture and political change in the modern period.

And then you became pregnant with Cerian. Can you say a bit about how your initial emotions shifted as the reality of her diagnosis become clear?

It was a regular twenty-week scan that brought the shattering news that Cerian would, almost certainly die either at, or shortly after birth. I arrived at the hospital totally unprepared for the information I was about to receive. At first, when the doctor told me there was something wrong with the baby, I simply assumed there must have been some kind of mistake. Whilst I was still in a state of profound shock, trying desperately to wrap my mind around the words ‘thanataphoric dysplaxia’ and ‘lethal skeletal abnormality,’ the consultant raised the question of a termination and asked me to consider ‘what I wanted to do.’ As the reality of the situation hit me, my initial instinctive response was to get the whole thing over with as fast as possible. I felt rushed to make a decision and the recommended medical option was to end the pregnancy.

Sarah C. Williams. (Courtesy to Crux.)

I had been raised in a Christian family and if anyone had asked me what I thought about abortion, I would have given some fairly lucid intellectual and theological reasons for opposing the practice. However, when I was actually faced with the unavoidable imperative to decide whether or not to terminate the pregnancy a distance mechanism kicked in. I became clinical in my thinking, and I found myself aping the language I had heard at the hospital of fetus not baby, viability not life.

Clearheadedly — so I thought at the time — I told myself, this is a medical crisis demanding a swift medical response. What shook me to the core was the phenomenal force of this self-protective instinct and I knew, even with my strong principles that I was capable in the extremity of shock, grief and confusion of aborting my child and doing so feeling that this was the best way forward for me, for this child, and for my family.

You decided to bring the pregnancy to term. Can you say a bit about what served as the foundation for this decision? As an ethicist I tend to think of principles and rules designed to defend and support the vulnerable, but you explicitly reject this as the basis for your decision. 

Principles, however good, were not — on their own — enough to carry me as a grieving individual through a pregnancy that would end in heartbreak and the possibility of watching my child die in pain. I am a principled person. I think analytically and much of my life as an academic is devoted to reasoning with care the principled rights and wrongs of causality and consequence, but when it came to something so unthinkable that impacted my own life so deeply and directly, reasoned principles were in actual fact by no means as powerful a fundamental motivation for action as I had assumed them to be. I realized, it is eminently possible to believe strongly in a principle and yet to react in ways that are complex and even contradictory, especially when we are afraid.

I needed not only principle but also hope. What changed the situation for me was a desperate prayer. I find it difficult to describe our experience, but as Paul and I prayed we felt as if God was asking us a question: “Here is a sick and dying child: will you love her for me?” This question shifted the issue from ‘principle’ to ‘person.’

Our situation no longer seemed primarily to be a matter of ethical decision making, or even of our capacity to act in certain ways and not in others. Rather we were drawn by an exquisite and gentle love – the love of a relational God for a vulnerable person that He had entrusted into our care. When I reconsidered the principle – abort or not abort – through the lens of this question it was not that the principle did not matter – it did – but rather it was love that superseded analytical examination. To think about love for our child simply in terms of a principle was somehow to reduce the beauty and the freedom of that love and also to reduce her personhood into a principle instead of a relationship.

Many of your professional colleagues and those on the medical team struggled to understand why you didn’t have an abortion. Some were openly hostile to your decision. What did being forced to defend the dignity and worth of your daughter in these contexts feel like? Were you able to help any of them understand why you did what you did?

It was a terrible shock to discover that we actually live in a culture where the decision NOT to abort an abnormal fetus requires an explanation. I discovered very quickly that most people assume that termination is not only the most reasonable thing to do in cases of fetal abnormality but also the best outcome for everyone involved. The act of pre-natal screening itself contains within it a set of unspoken expectations that parents will, given certain kinds of information, want to abort.

I also discovered that people wanted me to explain my decision using well-defined ‘principles’ to make them feel better. If I gave them a principled answer, such as ‘I don’t think abortion is right’ it allowed them to slot me into some kind of pigeon-hole or category. It enabled them to say, of course she would decide to carry the baby to term because she is an X,Y or Z person.

To think like this enabled people to remain abstracted from Cerian herself. She was a thing to be explained on the basis of my opinions as a mother, not as a unique human person to be considered in her uniqueness. As a result, I found myself increasingly unwilling to conform myself and Cerian to other people’s rigid boxes. I refused to talk about Cerian and my relationship with her as a ‘decision’ or a fixed ‘principle’ and I focused on the extraordinary ways in which she was teaching me how to live well in strong interdependent human relationships with hope and courage.

I felt privileged to carry Cerian. She was a gift, not an impediment, and it was surreal to encounter the incongruity of her humanity and the evident hostility that other people displayed towards the ‘idea’ of a child with abnormalities, ‘suboptimal’ chances, and restricted capabilities. And yes, I do believe Cerian did impact others around her, and I wish I had space to tell some of the particular and remarkable stories of the ways in which her short life and death served to change other people’s imaginations also, even those who were at the outset hostile.

As someone with a focus in bioethics, and in particular on vulnerable prenatal and neonatal children in medical contexts, I’ve been quite compelled by your book. On certain days it makes me question my focus on principles and rules designed to protect the vulnerable. Maybe my focus should instead be on stories and biography? But as you know all too well given the reactions to your decision, not everyone – not every family – experiences children like Cerian as a beautiful blessing who has something to teach them. Quite the contrary. Isn’t it important, then, that we maintain some consistent focus on moral principles and legal rules to protect vulnerable children from those who would do them violent harm?

Principles matter, but so do our imaginations. We must never use rules as an alternative to our personal care and protection for the weak and the vulnerable. We do need to resist all practices, whether legal, cultural or political, that threaten and undermine the beauty, dignity and freedom of human personhood in all its complex diversity. But as we resist, we must also envision.

Any law that is designed to restrain certain actions can only be rendered explicable and meaningful within a social, moral and political imagination that makes sense of why particular actions damage human relationships. For laws to make sense we need to be able to answer the question – what does it mean to be human? I believe our culture is suffering from an impoverished imagination. I would even go so far as to say our imaginations are starved of goodness.

I believe that we must as a matter of primary urgency nourish and build our social and political imaginations with hope, so that when we resist and challenge—as we must—our ‘principles’ are framed and immersed in a positive vision of the common good and above all framed by love. For this reason, stories matter. Stories have the capacity to furnish and invigorate the imagination. They can also change the ways in which we deploy language to describe our cultural predicament. I think of stories as the flesh on the skeleton of principles.

Stories animate the good bones of principle bringing them to life. We desperately need both, not one or the other.

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