Voices: When a baby dies, nobody knows what to say

·6-min read
Depending on the baby’s gestation when it died, there may be no funeral or death certificate, and there may be little or no social acknowledgement (Getty/iStock)
Depending on the baby’s gestation when it died, there may be no funeral or death certificate, and there may be little or no social acknowledgement (Getty/iStock)

“We don’t know what’s wrong with your baby.” These are the words we took home from the hospital three years ago, midway through a pregnancy that had been fraught with scans and tests almost from the beginning.

The consultants we had met with had no definitive diagnosis to offer, but now, we had a prognosis. With no more amniotic fluid, our baby’s lungs would not mature enough to let him breathe, and if he was born alive, he would die very soon after. To my birth plan I added a summary of the palliative care measures we had agreed on in case he showed any signs of distress, and stapled it to the consultant’s report. And then we waited.

Every pregnancy is a time of waiting and getting ready, and we had to remind ourselves again and again that we were waiting for a baby who would leave us as soon as he arrived, or perhaps before. The fear and sorrow were so heavy we felt our bodies would need to grow whole new limbs to support the weight of these feelings.

Meanwhile, my body was growing, and with it a baby whose life and world were contained within me. Here, in the very middle of me, he was as close and as far away as it was possible to be, and sleeping, oblivious. Was he just a dream? Were we dreaming all of it? And when we woke, would we be holding him in our arms, or would he be gone?

But in another way, it was easy to know what to do. We would love him. We would talk to him and sing to him. We would wait with him. Sometimes, when he kicked, I would tap a soft reply against my skin, which was the surface of his whole world. We would do all these things in the certain knowledge that we would never know what he might be making of these missives from another world – and in the knowledge that most likely, he made nothing of them at all. Nor could he possibly know, in any sense that we could understand, that he was here, that he was loved, that he was ours. And in this way, these gestures of ours belonged profoundly to him and not to us, and were profoundly bound to the present, and not the future. We existed in a present more vivid and more full of elemental love than we had ever before experienced, nor have we ever since: a desperate intensity of exactly here and exactly now.

When a baby dies, it is common practice in NHS hospitals to support parents in spending precious time bathing, dressing and holding their baby, making hand and foot prints, and taking photographs. We know that these “parenting practices”, as they are called, can greatly help parents come to terms with their loss by building up a repository of memories, photographs and precious objects to hold near in the days and months and years to come, to tell the story of their parenthood.

Because stories are important. We all depend upon stories to make sense of death. The stories we ordinarily depend upon – our beliefs, shared rituals, funerals, condolence cards, the sympathy of family and friends – together tell a story that makes the landscape of loss a little less unfamiliar, so that when we arrive, we know others have been here before us. But when a baby dies, every one of these stories may be missing. Depending on the baby’s gestation when it died, there may be no funeral or death certificate. There may be little or no social acknowledgement: perhaps the pregnancy was not common knowledge; perhaps nobody knows what to say, and so nothing is said, in the hope of avoiding causing further hurt.

And if nobody was able to meet the baby, there are no memories to share that might have helped help bolster the sense of the baby’s identity as a member of the social world we are part of. Saddest of all, it is all too common for parents themselves to be unsure quite who or what they are grieving, never having known their own baby – only that they ache for something lost. In this context, hospital-supported parenting practices play a powerful role in replenishing stories that are lacking.

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But they should only be part of the story. In many ways, when we bathed our son and dressed him, and photographed him in our arms, we were borrowing from a story that wasn’t really ours. We were borrowing from the story of a living baby, and this made the baby in our arms a sorrowful metaphor for what he might have been. Despite our sorrow, the memories of these moments are among the sweetest I have, and I have since written a kind of love letter to the many researchers and practitioners who enabled us to create them.

I believe there are other stories we can tell ourselves too, which are not metaphors for something living, but are alive in their own right – vividly and uniquely so. These are the stories of parenting practices that might scarcely be recognised when one thinks of parenting a living child, but that are real all the same. The rocking and singing and laying on of hands with no hope of ever being known. The intense fear and physicality of elemental love, which is manifested in the mind as much as in the body, as a whole world and a whole life is contracted into a womb that seems both as far away and as close at hand as it is possible to be. A love that takes in the slipperiness of birth and the deepening of death; the intense here and now of a child whose future we will carry without them; the commitment to love even when more love equals more sorrow. We are parents too, and these are our stories.

Representation matters, and as we strive to create a picture of parenthood that is truly inclusive, we all need to listen to these experiences – and accept them, not as distant outliers, but as part of the ordinary landscape of parenthood. Indeed, these stories sadly are more ordinary than we might like to believe. In the UK alone, a baby dies near birth almost every two hours – affecting 5,000 families a year – and one in five further pregnancies end in miscarriage.

Local and national baby loss charities support bereaved families to share and explore their own stories of loss, and in my experience this work is vital. I’m now working with one charity to deliver writing resources into the hands of bereaved parents to help them capture their precious memories of parenthood. I hope these resources help parents like me give weight to their stories, and I hope these stories make it out into the wider world, as we can all learn so much more about what it means to nurture new life when we can glimpse it at its most elemental.

Last month, The Lancet published its Commission on the Value of Death, which argues that death needs to be reframed not only as normal, but as valuable, for its place in all our lives, and for the lessons it can teach us. Perhaps this is nowhere more true than when death accompanies birth.

Dr Tamarin Norwood is a research fellow at Loughborough University, a visiting research fellow at the University of Bath and convenes the Lives in Medicine network at the University of Oxford. Her essay ‘Something good enough’ won The Lancet’s Wakley Prize 2021