On the recent World Poetry Day, I discovered ‘The Elephant in the Room’. A metaphor for discussing mortality, it charts the ‘large and squatting’ elephant we squeeze around politely with ‘How are you?’ and ‘I’m fine’. I was particularly struck by its closing lines. ‘Oh, please, let`s talk about the elephant in the room; for if we talk about their death, perhaps we can talk about their life. Can I say their name, and not have you look away? For if I cannot, you are leaving me alone. In a room. With an elephant’.
I was reminded of it again watching the documentary Child of Mine on Channel 4 last night. If you didn’t see it, I’d urge you to catch up, although it isn’t easy viewing. It is a heartbreaking and at times harrowing story of three families experiencing the pain and devastation of having a stillborn baby. It was an emotional watch – you couldn’t help but be moved by parents Fiona and Niall, whose daughter Matilda was stillborn at nine months. Theirs was a grief that was difficult to imagine.
But as well as being a painful watch, it was also an uncomfortable one. It reinforced how we shy away from these taboos – we find it so difficult to find the words to say to a friend who has lost a child. And that, as human beings, health professionals are not immune from this discomfort.
The death of a baby is not a rare event and does not discriminate. According to the charity SANDS, 15 babies a day are stillborn or die within four weeks of birth in the UK, and the charity Tommy’s estimates that one in four pregnancies end in loss. That’s thousands of people in the UK affected by the death of a baby or the experience of pregnancy loss. Last week, a coalition of more than 60 charities across the UK came together as part of Baby Loss Awareness Week, to raise awareness about the key issues affecting these people. Throughout the week bereaved parents, their families and friends and those who support them united to commemorate the lives of babies who died during pregnancy, at or soon after birth and in infancy.
I was proud that Together for Short Lives was a partner in the week. We have been helping to break the silence on baby loss, joining a wave of light to remember babies who died too soon, turning buildings blue and pink, and sharing family stories. Josie’s daughter Billy-Rose died when she was just six months old, and Danny and Sam’s daughter Lexi lived for just 19 days. The week was also an opportunity to highlight the support available to families: Lexi and her family were able to go to their local children’s hospice, Keech Hospice Care, at the end of her life, so that the family could make special memories with Lexi in the little time they had together. As dad Danny says, “We had 19 days with our little girl. The six days we were at Keech were truly special. Our only regret is that we didn’t go there sooner.”
Baby Loss Awareness Week also included the launch of a beautiful and sensitive animation showing the range of feelings families go through following the loss of a baby – anger, isolation, despair and grief. And despite the increasing focus and attention on baby loss and bereavement, there is still a sense of taboo about children dying young. Our own commissioned YouGov survey found one in three people (38%) would not feel comfortable talking to a friend whose child had been diagnosed with a life-limiting condition. This can compound families’ sense of being alone in their grief. It is not surprising – these are very sensitive situations where we struggle to find the right words, or understand how we can help. We shroud death in euphemism to avoid its rawness, to try somehow to soften its hard edges. At worst, we say nothing, for fear of getting the words wrong.
While understandable, avoiding these conversations does families a disservice. They don’t want or expect us to solve their grief or make it better. But they do want their child to be recognised, to be called by their name, however short their life was. They do want their friends to walk beside them through their grief, wherever that journey takes them.
Which is why Child of Mine is so powerful and important. It is a visceral look at the heartbreak of baby loss and still birth. It sends a powerful message about why we need to invest in bereavement support, and train staff so they are confident in talking to and supporting families, particularly to make memories with their baby – taking photos, and footprints – and having those precious moments before you say goodbye. But it is also a powerful reminder that we must talk about the elephant in the room. Because if we don’t, we leave grieving families alone in a room. With that elephant.
Andy Fletcher is CEO of Together for Short Lives