SIDS rates in England and Wales reach a new record low

Data released this week by the Office for National Statistics (ONS) show that rates of unexplained infant deaths[1] in England and Wales have fallen to a new record low. There were 191 unexplained infant deaths in 2015 (0.27 per 1000 live births), compared to 217 in 2014, 252 in 2013, and over 300 in 2004 and 2005.

This continues a really encouraging trend that builds on the early successes of the Back to Sleep campaigns of the 1990s. Part of the success could be due to continued declines in maternal smoking (down to 11.4% in 2014/15), and also to the work of the Lullaby Trust and other organisations in promoting safer sleeping messages.

“The further reduction in SIDS rates for 2015 is extremely positive and demonstrates the effectiveness of following safer sleep advice and the importance of making sure that advice reaches all parents and carers. The Lullaby Trust has been campaigning over the past 25 years to ensure that this happens. Although SIDS rates have decreased significantly over the past decade, 191 babies still died in 2015 and the risk has not gone away. We need to ensure that parents continue to recognise the vital importance of following safer sleep advice. Only by making all families aware of the steps they can take to help protect their babies, can we save more lives and drive the number down.”

Francine Bates, Chief Executive, Lullaby Trust

The safest place for your baby to sleep is on their back in a cot in the same room as you

You can find the safer sleep advice on the Lullaby Trust website:

Lullaby Trust Safer Sleep Advice

[1] The ONS data include those deaths coded as Sudden Infant Death Syndrome (R95) and unascertained (R99)

November 30, 2016November 30, 2016

Launching our new national guidelines for responding to unexpected child deaths

The unexpected death of an infant or child is a huge tragedy for any family, leaving them bewildered and grieving, and cutting across all their joys and hopes for their child. While much progress has been made in our understanding of the causes of such unexpected deaths and how to prevent them, sudden infant death syndrome (SIDS) remains the biggest cause of infant death after the first week of life, with over 200 babies per year dying this way in England and Wales. Whenever a child dies unexpectedly, there is a requirement for the coroner to investigate the death. These investigations can, however, further add to the parents’ distress. It is therefore crucially important that each unexpected child death is thoroughly investigated in a sensitive and supportive manner.

Every week at least four families in England and Wales experience the sudden, unexpected death of their child

Sudden unexpected death in infancy and childhood – Multi-agency guidelines for care and investigation

These new national guidelines have been published by a multi-agency working group convened by The Royal College of Pathologists and The Royal College of Paediatrics and Child Health. They provide guidelines for professionals responding to an unexpected child death which are both sensitive to the needs of grief-stricken parents and seek to help parents understand why their child has died.

The revised guidelines build on previous work published in 2004 and seek to outline best practice for the different professionals involved in responding to an unexpected death and to ensure that the response to such deaths is both sensitive and thorough.

I have been enormously privileged to have been part of the group writing these new guidelines, and also to have been involved in some of the research on which they are based. We have seen huge improvements in the ways police and health professionals respond to such deaths, but there is always more that we can learn. So I hope that the revised guidelines will be a stimulus for improving services across the country.

In my work with bereaved families, I have come across terrible situations where parents have been kept in the dark or made to feel like criminals, but also some great examples of how families have been supported through the days and weeks following their child’s death and how police and health professionals have worked together in a sensitive, thorough, and caring manner. Parents often tell me that what they want, above anything else, is to understand why their baby died, but also their hopes that by investigating their child’s death thoroughly, we can work to prevent other families having to go through a similar experience.

The guidelines are freely available for download from the Royal College of Pathologists. Click here to download the guidelines.

The Lullaby Trust

While so many families continue to face this awful tragedy, we must do everything we can to support those families and to prevent future child deaths. Particularly at this time of year, many parents will be feeling the grief so much more intensely. It has been really encouraging to be involved with the Lullaby Trust who continue to work to support families and professionals as well as supporting research and public health initiatives to further reduce the incidence of SIDS. This week, they are once again holding a fundraising challenge through The Big Give: From 12 midday on Tuesday 29 November to 12 midday on Friday 2 December donations made to us via The Big Give website will be matched pound-for-pound; this means a donation to us could go twice as far absolutely free of charge to you!

May 31, 2016

“What’s natural about a healthy person dying?” Making sense of the inexplicable.

“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.

Parental understanding and self-blame following sudden infant death: a mixed-methods study of bereaved parents’ and professionals’ experiences

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

March 13, 2016May 31, 2016

Safer Sleep Week

Safer Sleep Week, from 14-20 March, is The Lullaby Trust’s national awareness campaign aiming to raise awareness of the importance of safer sleep and how to reduce the chance of Sudden Infant Death Syndrome (SIDS).

In the early 1990s the UK, along with many other countries, saw a dramatic reduction in the number of babies dying as SIDS. In the 1980s over 1,000 babies in England and Wales died suddenly and unexpectedly each year. Following the Back to Sleep and other campaigns, this figure dropped by 2/3, and has continued to fall since. Nevertheless, every year over 200 families lose a baby in this way.

SIDS Incidence, England & Wales, 1985-2011

Over the past 15 years I have met and spent time with lots of families whose babies have died suddenly and unexpectedly. Every single one is heart-breaking: to sit with parents whose baby has just died, to feel their anguish, and to hold their big questions, knowing that there are no easy answers, and nothing I can do to take away the pain.

And yet, perhaps the most heart-breaking thing of all is that so many of these deaths could be prevented. We may not know the causes of SIDS, but we do know very clearly how to prevent it.

The messages are really very simple:

So please, share this blog, get the messages out, and maybe you might help to save a baby’s life.

You can get more information, support and resources on the Lullaby Trust website: http://www.lullabytrust.org.uk/LThome