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'I chose to have a baby I knew was going to die'

Sarah Williams tells Sarah Olowofoyeku how her life was changed by carrying to term a pregnancy that she knew would end in the death of her baby

When we screen for foetal abnormalities, we’re weeding out the weak

AT a 20-week scan, Sarah Williams heard words that mothers-to-be do not want to hear: ‘Something is wrong with your baby.’ The decision that she made in response to this news, 16 years ago, proved life-changing.

Sarah and her husband, Paul, already had two daughters, but their unborn child had been diagnosed with thanatophoric dysplasia, a lethal skeletal deformity. The baby’s chest was too small to sustain proper lung development, and Sarah was told that when the baby was born, it would not be able to breathe. Despite the prognosis of certain death, Sarah and Paul decided to carry the pregnancy to full term.

‘We prayed the night of the scan, and it was a profound moment,’ Sarah explains. ‘God met with us in a tangible way, beyond what either of us had ever experienced before. It gave us a sense that we and God were in this together. It felt as though God was committing himself to us, to help us help each other.’

Although Sarah had always had a faith, this encounter with God was unprecedented. ‘One of the downsides of growing up in a Christian family is that you take on faith secondhand,’ she says. ‘I knew the right answers and what I was meant to do. But the way I perceived God was an extension of trying to do the right thing. I was anxious and driven, always trying to achieve and do things well. I felt as though God was sitting behind me and evaluating me.

‘Throughout that experience with our unborn daughter, starting from the night we prayed, I encountered God for myself in a radically transformative way. I knew about God before, but when I uncovered the extraordinary, unconditional nature of his love, it blew open all my categories. I had grasped that he loved everybody, but then I realised not just the depth of his love for the weak, but also that he became weak himself. God identifies completely with human weakness. So what he loves about me is not what I achieve or my success – he loves me intrinsically.’

The couple’s experience of this love drew them to the name they eventually gave their daughter. Sarah recounts a conversation with Paul and their eldest daughter Hannah in the book she wrote about her pregnancy, Perfectly Human:

‘What do you think of this?’ He passed me one of the name books.

‘Cerian…’ I read. ‘How do you pronounce it? With a soft “c” like certain?’

‘No, with a hard “c” like “cat”.’

‘What does it mean, Daddy?’ Hannah asked.

‘It’s Welsh for “loved one”. It means “loved”. Paul’s voice was a bit wobbly.

‘Perfect,’ I whispered.

The name characterised the rest of the family’s relationship with their youngest daughter and littlest sister. Cerian was loved by them all. Sarah felt God loving her, taking care of her and being a source of strength. As a family, they experienced joy, but also pain and grief. It was far from easy.

In her prayer journal, Sarah one day wrote: ‘I asked God to take the nausea away but he didn’t answer my prayer … I find it hard to really trust him to be good to me in the detail. My faith and trust are stretched to the limit, I am angry with you, God.’

She tells me: ‘On top of the pregnancy going wrong as it were, I also felt incredibly ill. I had hyperemesis and kept being sick. And I had polyhydramnios (which is too much amniotic fluid). I didn’t understand. I thought: “OK, Lord, I’m not going to have a live baby. Could you make it not quite so horrible?” It seemed inexplicable that I had to feel the physical stress too.’

Towards the end of her pregnancy, Sarah almost lost her life after a severe drop in her blood pressure. Thinking about this, she says: ‘I sometimes ask myself, if I had known beforehand about the potential risks to my own life, would it have changed my decision? It’s a difficult question, because what would it have been like for my other children to lose me to a pregnancy that wasn’t going to lead to life? It makes me wonder what the benefit of prenatal screening is.’

Since Cerian’s death, Sarah has been thinking about what it means to be human. ‘We’re in danger of treating children as commodities. We get to choose the timing, the form and, increasingly, their genetic make-up,’ she says. ‘Thousands of people from the UK are going abroad to select embryos to predetermine the sex of their child. It flies in the face of believing in a God who is Creator.

‘When we screen for foetal abnormalities, we’re weeding out the weak. This development is happening very slowly and there is such careful language around it, but if we step back and look at it, it isn’t OK. What would it be like if we only had “normal”? I don’t want to live in that kind of culture. Everybody’s abnormal,’ says Sarah. ‘That’s what makes people beautiful.’

‘Cerian taught me what God was like. I could see Christ in her. He identifies himself with those who do not have power and agency.’

It is why she struggles with some law surrounding unborn babies. Abortions of healthy babies are permitted up until 24 weeks, but if a baby is found to have a foetal abnormality, the pregnancy can be terminated at any stage.

‘We’ve got two legal systems,’ she says.

‘One for the well and one for the unwell. There’s no consideration of the humanity of the abnormal. But most people who carry babies experience the personhood of their baby, aside from their own body.’

In her book, she writes: ‘To condone this treatment for some not only dehumanises those who are never born, it dehumanises all of us. To make human personhood contingent in any way upon physical “normality” is to strip all of us of our inherent and intrinsic worth as persons.’

Sarah had been aware of issues surrounding disability from a young age, having experienced it in her family while growing up. ‘I’m the oldest of six. My mum was disabled when I was 13 years old, and I had to look after her,’ she says.

‘But the experience made me frightened of caregiving. When you are young and experience the necessity of caregiving, it triggers this feeling of being trapped.

‘So there was a lot of fear for me in having children, of feeling that I would be trapped.

‘I thought of all the things I was going to lose. Nobody prepared me for the unutterable joy of these human beings who come into your life as a pure gift from start to finish. Having children does limit your life, and you don’t have the kind of freedoms you had before, but what does freedom mean if it doesn’t mean to serve one another and be in community?’

Sarah found strength in her own community during her pregnancy, but asking for help did not come naturally. ‘I’m the responsible caregiver,’ she says. ‘So being vulnerable about my needs was a struggle. I could’ve shut down and not asked for help, but I made a choice: I had to.’

When it came to her labour, Sarah was able to experience a few precious moments in a hospital bed with her unborn child.

She recalls: ‘The presence of God came powerfully into the room. It was unlike anything I ever experienced, before or since. I knew with certainty that God had come in his love to take a tiny deformed baby home to be with him.’

It was confirmed later that Cerian did die in that moment – a painless death before her bones would have been crushed through labour.

‘When you lose a baby it’s different from any other bereavement,’ Sarah says. ‘Both partners are hurting and you don’t have the emotional resources to support one another. Paul and I had to work to understand each other during that period, but we felt a tremendous sense of God’s presence.

‘Crazily we had been prepared for that difficult time by a Christmas present that someone had given us early in our marriage. It was a book which portrayed the grieving of a husband and wife when they lose their three-year-old child, and their marriage falling apart. It was the weirdest Christmas present, but we read it and discussed it, so we were aware of the dangers. You think you’ll come together in the loss, but the loss is so painful that it can pull you apart. That’s when the wider community is really important.

‘Grief is something you live with your whole life. But my experience with Cerian has fundamentally changed how I live it. I was the youngest member of the history faculty at Oxford, but I left three years after Cerian died. I didn’t want to work with powerful people any more. Paul left his City job, and we moved to Canada to teach at a graduate school of theology.

‘Cerian was a gift to Paul and me in pulling us together in our shared passion for God. We were both doing well in our jobs, but we had two beautiful children who we were hardly spending any time with. When somebody dies you often reassess your own values and your own mortality.

‘I wish I could say you get to the end of a grief and draw a nice neat line. But at every milestone, we feel sad – around Cerian’s birthday, going through the stages of life with the older girls.

‘When I look at my life I think, yes, it would have been good if everything had gone well. But I also think that God somehow weaves together and redeems all the things that go horribly wrong. He is faithful and gracious.’

Sarah admits that at her 20-week scan ‘it felt as if the easiest, quickest and least painful thing to do would be to get it over with and have a termination.To endure the pregnancy for 16 weeks seemed incredibly difficult and crazy. But,’ she says, ‘it is terrible to fear suffering, because suffering doesn’t have to destroy us. And when I put those 16 weeks in the context of 16 years, I think I wouldn’t have missed one minute of that.

‘Never at any point since Cerian have I ever said to myself: “Did I do the right thing?” Human beings don’t lose out by loving. They lose out by failing to love.’

  • Perfectly Human is published by Plough

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