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10/10/2018 14:06 BST | Updated 10/10/2018 14:06 BST

After Finding Out She Had Almost No Chance To Live, I Chose To Carry My Baby To Term. Her Short Life Reshaped Mine.

I would not trade the time I had with Cerian for anything - she was our child and we loved her, no matter what kind of body she had

Sarah Williams
The Williams family, shortly after Cerian's death
HuffPost UK

I was in a rush to get home from the hospital on the day of the routine 20-week scan. I’d been teaching all morning and my mind was filled with supper plans and the usual round of lecture preparation for the following day. It was our third pregnancy and although this was a much longed for baby, seeing images on the screen had definitely lost its mystique.

And then the nurse put her hand on my arm and said the words every expectant mother hopes she will never hear: “I’m afraid there is something wrong with the baby.”

Within an hour it was clear that a severe skeletal dysplasia would claim my daughter’s life either at birth or shortly after. It was also clear that everyone expected me to respond to this news by choosing to have a termination. 

Most of us take the practice of prenatal screening for granted. Scans are voluntary. It is the informed and consenting parent who decides how to act on the basis of the information they receive while the social practice itself is framed as morally neutral. Yet when I had to decide whether or not to have an abortion, I encountered a system that was anything but neutral.

Although termination was presented in the language of choice, it was the only recommended medical option in the circumstances. I left the hospital feeling both rushed and pressured to get the foetus out of my body as quickly as possible. I was completely unprepared for the dreadful decision we had to make.

At first, in the shock, a kind of distancing mechanism kicked in and it took many hours before I was able to think straight. Looking back, I am so glad that I gave myself time and space to think and feel, to talk about and process the situation with my husband before we reached a decision about how to proceed.

When we returned to the hospital to tell the doctor that we wished to carry our daughter to term, the consultant didn’t hide his surprise. He kept saying, “but this child will not live”. We quickly discovered that the hospital budget was weighted towards prenatal screening and stem cell research, not obstetric care. We felt as if our choices were being managed prescriptively by institutionally defined policies that anticipated certain kinds of choice and not others.

I found myself asking, why are we doing this?

As the pregnancy continued and the inevitable questions arose, I realised that we live in a society in which the decision not to abort an abnormal foetus requires an explanation—even a defence. Prenatal screening is not a neutral practice. It sends a message about what it means to be human. Though rarely stated explicitly, this message is nonetheless powerful and formative, and I felt the force of it as I walked my sick daughter towards her ‘birth day’. Prenatal screening relies on society’s evaluation of what is acceptably normal. In cases of foetal abnormality, termination is assumed to be both right and necessary for a child whose quality of life might prove suboptimal according to this definition, even though in reality this is a highly subjective determination. Only a tiny minority of parents face the heartache of foetal abnormality, but the social practice of screening teaches all of us to ask - does this child have a healthy body? We are taught to ask this question as if this were prior to the ongoing viability of a pregnancy, as if it were prior to personhood. The practice of prenatal screening legitimates the idea of terminating the life of a human being whose physical capacities are suboptimal, and this idea affects every one of us.

Our daughter did not live beyond birth but her life reshaped mine in ways that were invaluable and life affirming. I would not trade the time I had with her for anything. We gave her a name; Cerian – meaning loved one in Welsh. As a family we celebrated her life, short though it was. We had the dignity of a beautiful funeral surrounded by friends and family - something that could never have happened if we had opted for a termination.  Cerian was precious and unique. She was our child and we loved her, no matter what kind of body she had. Although nothing ever takes away the grief of losing a child, I have never had to ask myself: what if? I have since met families who were given similar diagnoses to ours, whose children turned out to be healthy at birth.

As a culture we tolerate the literal disposal of the weak, but in condoning the social practice of prenatal screening, we construct a value system for ourselves by which ultimately none of us can live. In screening out the weak, we are saying personhood is conferred only on the ‘worthy’, on the ones we choose at the time that we choose them. We establish a set of criteria by which we then judge ourselves—we must be strong and physically capable to justify our existence. But the gift my daughter gave me during her short life was to demonstrate that it doesn’t have to be this way. Human weakness, disability and even our physical dependence on one another for care in community is a gift. We do not have to be perfect or ‘normal’ to love and to be loved.

Sarah C. Williams, DPhil (Oxford), is author of Perfectly Human: Nine Months with Cerian

Life Less Ordinary is a weekly blog series from HuffPost UK that showcases weird, wonderful and transformational life experiences. If you’ve got a story to share, email ukblogteam@huffpost.com with LLO in the subject line. To read more from the series, visit our dedicated page