“I know they are saying natural causes but what’s natural about a healthy person dying?” – bereaved mother
In spite of huge advances in research and policy, our understanding of the many genetic, biological and environmental factors contributing to sudden infant death syndrome (SIDS) remains partial. Over 200 babies in this country die suddenly and unexpectedly each year. This is far fewer than the thousands who died in such ways during the 1980s, and largely attributable to recognising and tackling environmental risk factors such as unsafe sleep. Nevertheless, each one of these deaths is devastating and we owe it to parents and families to do everything we can to prevent them.
One of my PhD students, Jo Garstang, has just published some of her research based on interviews with bereaved parents, listening to their experiences and how they understood their infants’ deaths.
Working with Jo over the past few years has given me the opportunity to reflect on my own experiences with bereaved families.
It seems to me that there are three basic drivers underlying how we grieve, which I like to think about in terms of saying goodbye, moving forward, and making sense.
Saying goodbye captures the expressive aspects of grieving, encompassing the various ways in which we express the pain and hurt we feel; moving forward, the restorative aspects – those actions that allow us to move on with life, recognising that our lives have changed, but need to carry on. This is not letting go or moving on as though the loss we have been through has not happened, but rather holding the pain that we feel as a part of our lives as they now are, yet not being crippled by it.
The third aspect, making sense, overlaps with both of these and it seems to me, is a central part of all grieving. Whenever we lose someone through death, we need somehow to make sense of that, to find a narrative that helps us to understand and live with the pain. And this is never more so than in the untimely death of a child.
“No parent should have to bury their child.”
– King Theoden, Lord of the Rings
One of the greatest needs of the bereaved parents I have met is a need to explain and make sense of their grief. Different families approach this need in different ways, but one of the key findings from Jo’s research was that many parents construct a narrative of blame. Several families expressed their frustration at not knowing why their baby died, and the powerlessness that imposes.
“An unexplained death by its nature is an unpredictable event rendering the parents powerless to prevent future tragedies, thus increasing the anxiety and grief.”
In response to this, some parents blame themselves for their child’s death, and end up carrying a huge burden of guilt on top of the grief with which they are already living. Others seek to blame others – health professionals, police officers, other family members – for their baby’s death or for what happened afterwards. All of this provides a frame of reference within which the family can make some sense of their grief, and both say goodbye to their child and start to move forward.
“Self-blame can be a normal part of grieving after infant death: by blaming oneself for the death, it stops being a random, unexplained event, and can be controlled, giving a sense of order; this situation may be easier to live with.”
However, while blame, whether self-blame or blaming others, may help ease some of the pain and helplessness of unexplained grief, it seems to me that in the long run this is counterproductive and ultimately works against fully saying goodbye and moving forward.
In contrast to those families who seemed stuck with narratives of blame, some families in Jo’s research neither blamed themselves, nor anyone else, for their child’s death. It seems to me that this provides a resolution: an understanding that makes sense, and enables a healthy saying goodbye and a way to move forward. Some of these parents were able to accept the way in which different environmental factors may have contributed to their child’s death without having to live with perpetual guilt over it. Such an acceptance provides hope: for any future children, it means there are things the parents can do to reduce the risk of death.
And so, one of the key findings from this research is that we owe it to parents to be honest, even when that might be painful. It isn’t easy to discuss with parents how their actions, such as smoking or falling asleep on a sofa with their baby, might have contributed to their child’s death. But if we do so frankly yet with compassion, it seems to me that we can move beyond an unhelpful and patronising attitude, to one which truly supports parents at a difficult time and enables them to grieve, positively.
“We should acknowledge that risk factors may not be easily modifiable, but this should not stop us sharing the information with parents, to help them understand more about why their child died and to assist them in making informed choices with subsequent infants.”
You can read Jo’s research paper online at:
Parental understanding and self blame