Reflections on retirement 3: Longing for a world where children don’t die

Last week I received an email from one of our administrative team at the medical school, reminding me that I have just over two months to fully clear my office – to shred or archive all old research papers and data, get rid of the mountain of books and files, empty my filing cabinet, clear my hard drive, and hand back all my IT and other equipment.

Once I’d got over my initial shock and the reactive ‘I can’t possibly do that, there’s far too much, and what about all that academic stuff I want to keep on?’ I realised that perhaps it wasn’t such a bad thing after all. I do need to wake up to the fact that, come October, I will no longer be a paid employee of the University with all the benefits (and responsibilities and frustrations) that brings. It is also high time I had a good clear out of all the accretions of 13 years as an academic.

When was the last time I opened that file of research interviews I did back in the late 1990s?

So, taking the bull by the horns, I started work on one of my filing cabinet drawers. After filtering through each file, I think I ended up with just two or three papers worth keeping.

This particular drawer held all my case notes from the South West Infant Sleep Scene study I did with Peter Fleming in the early 2000s. As I started shredding the interviews from those early home visits to bereaved families, I reflected on the blessing it has been to meet with, and hopefully offer some support to, so many amazing families.

Longing for a world where children don’t die

The dramatic drop in SIDS rates in the 1990s has been one of the most impressive successes of epidemiological research this century. I have been immensely privileged to meet and work with many of the leading researchers from around the world who contributed to this work, and in my small way, to contribute to ongoing research, teaching and practice that has seen SIDS death rates continue to fall to this day.

At times it has been truly heart-breaking to meet with families in the horrendous trauma of their child’s death. But it has also been encouraging to know that the work we did in Bristol and elsewhere has contributed to more compassionate and thorough responses to unexpected child deaths. I have, over the years, had many expressions of thanks from bereaved families who have appreciated the care and support they have received from my colleagues in health, police, and social services.

And, even more encouragingly, over the course of my career, I have seen the numbers of children’s deaths decrease.

When I started my medical training in 1982, nearly 8,000 children in England and Wales died before their fifth birthday. By the time I started work as a consultant, that figure had fallen to less than 4,500. Now, as I retire, the figure is just over 3,000. Just looking at the past two decades, that suggests there are 15,000 children and young people alive today who might not have been if our mortality rates had stayed at the 1997 level.

Has my work contributed to that fall?

Perhaps I will never know, but I like to think that, in some small way, my research and teaching and the little steps I have taken to engage with individual parents and children might have made a difference to some. And perhaps, with so many others making their small contributions, we may just be moving towards a world where children don’t die.

August 18, 2017

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!

August 16, 2016

Good news for parents with young babies

The number of unexplained infant deaths in England has fallen to its lowest ever level with just 212 babies dying of SIDS/unascertained causes in England in 2014 compared to 252 the year before[1].

This continues a steady downward trend in the SIDS death rates since the dramatic falls in the early 1990s. To lose a baby suddenly and unexpectedly is one of the worst possible fears of many parents, so the fact that the numbers are continuing to decline is really positive news.

Preventable Infant Deaths

However, for over 200 families to go through this experience each year is still a real tragedy, particularly as many of these deaths are preventable. The data from the Office for National Statistics show that the risks remain particularly high for young mothers, for those without a stable partner, and for those in manual or routine occupations. These are some of the most vulnerable families in our society.

We know what is needed to prevent most of these deaths. Perhaps the biggest impact on the declining SIDS rates has been the continued decline in the number of women smoking during pregnancy, now (2015-16) running at just over 10%, compared to 15.1% in 2006-7.[2]

Data from our 2003-6 study in SW England showed that 57% of mothers whose babies died in infancy smoked during pregnancy compared to just 14% of the random controls.[3] If we can continue to reduce both smoking during pregnancy and postnatal exposure of infants to parental smoking, we could reduce the rates even further.

Spreading the messages about safe sleeping, and helping parents, particularly those in the most vulnerable groups, to follow those messages will also help.

Little Lullaby

To help these parents, the Lullaby Trust launched Little Lullaby earlier this year – a tremendous resource for young parents. I’d encourage you to have a look and pass the link on to any young parents you know.

Little Lullaby is a social network for young parents providing them with a space where they can learn about safer sleep, while also gaining support from their peers through the ups and downs of pregnancy and parenthood

References

[1] https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/unexplaineddeathsininfancyenglandandwales/2014

[2] http://digital.nhs.uk/article/2021/Website-Search?productid=21116&q=number+of+mothers+smoking+during+pregnancy&sort=Relevance&size=10&page=1&area=both#top

[3] Blair PS, Sidebotham P, Evason-Coombe C, Edmonds M, Heckstall-Smith EM, Fleming P. Hazardous cosleeping environments and risk factors amenable to change: case-control study of SIDS in south west England. BMJ 2009; 339: b3666. doi:10.1136/bmj.b3666

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

May 14, 2016May 14, 2016

Big Tobacco: absolving the corporate conscience

After my enraged outburst against the seemingly callous indifference of the big tobacco companies to the immense suffering they cause to millions of families around the world, I decided I should do a bit more than just rant and rave.

So, taking a deep breath, I wrote to the chairs of the boards of the two big UK based companies, inviting them to come with me to meet some bereaved parents whose babies died suddenly and unexpectedly and for whom, their own addiction to cigarettes was undoubtedly a contributory factor. I didn’t expect anything great, but I felt that maybe, if they did accept and were to hear, first hand, these families’ stories, maybe, just maybe, it might touch something.

Richard Burrows: Chair of Board of Directors, British American Tobacco

Mark Williamson Chair of Board of Directors, Imperial Tobacco

As I looked, on their websites, at the ordinary, human faces of the directors of these companies, I felt once more saddened and angry: surely, these were normal human beings, just like you and me, with friends and families whom they loved and cared for. And yet, somehow, these people could sit in their offices and corporate board rooms, thinking about profits and marketing strategies and all the other things that directors think about, while blocking off the death and suffering their products are causing.

After a long gap, I did hear back from the head of corporate affairs at British American Tobacco. Not surprisingly, they turned down my offer for a meeting with bereaved parents. As they pointed out, it is probably ‘not appropriate for us to play the role of adviser on public health issues.’

“We clearly acknowledge the reported risks related to smoking while pregnant and explicitly endorse the advice of health professionals such as yourself to refrain from smoking during pregnancy. We also agree that people should not smoke in the vicinity of children.”

– British American Tobacco

Imperial Tobacco has remained silent.

So does acknowledging the risks absolve the corporate conscience?

And meanwhile, while hundreds of babies die as a result of exposure to parental cigarette smoke, and millions worldwide suffer and die of diseases caused by tobacco, the corporate giants will continue to manufacture and promote their wares.

This coming week, the High Court in London will rule on a challenge by British American Tobacco PLC, Imperial Tobacco Group PLC, Japan Tobacco International and Philip Morris International Inc. against the UK parliament’s vote to ban branded packaging of cigarettes. If the High Court rules in favour of the government, this will come into effect in May next year, marking a huge step forward in the battle against tobacco, and following Australia who went that way in 2012 and have since seen smoking prevalence decline from 19.4% to 17.2% (with a quarter of that decline being attributed to the introduction of plain packaging).

I don’t know how much the court case will have cost, but I suspect it is not unreasonable to guess that hundreds of thousands of pounds of taxpayers’ money has been spent in fighting the challenge, money that could, instead, have been invested in health, education or welfare. And that, too, makes me angry.

March 18, 2016March 18, 2016

SIDS, restorative justice and big tobacco: why I’m feeling angry

The other day I visited a couple whose baby had recently died suddenly and unexpectedly. This family stood out as unusual in that neither parent smoked. The vast majority of bereaved parents whom I have visited over the past years have been smokers, and it seems clear to me that this is one of the biggest modifiable risk factors for SIDS.

In our South West study of sudden infant death in 2003-6, we found that 59% of mothers of SIDS infants had smoked during pregnancy, compared to just 14% of mothers whose babies had not died, equating to a 13-fold increase in risk[1].

And this makes me angry.

Not at the mothers or fathers who expose their babies to such risks, but at the callous greed and indifference of those who continue to produce and market the cigarettes that are killing these babies.

Over the past few months, Lois and I have had the privilege of visiting a local family assessment unit as lay chaplains. The families placed here for assessment come from a range of backgrounds, but all have been treated harshly by life, and the odds seem stacked against them and their babies. Every Saturday night many of these parents come to the chapel with their babies for a bit of space: away from the constant scrutiny and surveillance. Here in this sacred space they can be themselves. We have a laugh together, share some of Lois’ home baking, and join in a simple liturgy of reflection. Many of them ask us to pray a simple prayer of blessing over their baby: they, like all parents, long for their babies to have a better life.

After our time together, almost without exception, these parents congregate outside the chapel, with their babies, in the outdoor smoking shelter. We sometimes stop and chat a bit longer before heading off. And I feel angry. There in that shelter, these parents are slowly poisoning themselves and their babies.

But the parents themselves are victims: victims of the aggressive marketing of the cigarette companies that got them addicted in the first place; victims of a society that alienates and marginalises them; victims of their background and culture that leaves them feeling powerless to change, so that often the only solace they can find is in that little fix of nicotine and tobacco.

And meanwhile, the tobacco companies continue to produce their poison.

In 2012, 5,800,000,000,000 cigarettes were smoked globally.[2]

The WHO estimates that one person dies from tobacco every 6 seconds; 10% of these as a result of exposure to second-hand tobacco smoke.

Meanwhile, the tobacco giants continue to rake in their profits. Jonathan Gornall, writing in the BMJ, cited operating profits of 9.2 billion pounds for Philip Morris International, and £6.1 billion for British American Tobacco.

When I sit down with a parent whose baby has recently died and they ask me that deep, deep question, ‘Why?’ I am sometimes tempted to cry out in pain, ‘Because of the greed and indifference of the chief executives, the board members and the shareholders of the big tobacco companies who have made you and your baby victims! Don’t ask me why your baby died, go and ask them.’

But surely those people, too, must have a heart, somewhere, that beats?

Is it too much to hope that somehow those hearts could be changed?

In his book The Book of Forgiving, Archbishop Desmond Tutu, with his daughter, Mpho, reflect on their painful experiences through their lives in South Africa, and particularly the Archbishop’s involvement in the Truth and Reconciliation commission. Back in the 1980s it seemed impossible to hope that the perpetrators of apartheid and the unjust systems of that country could ever change. And yet, they have found that through the hard, long road of restorative justice, people have changed; truth has come to light; and reconciliation has occurred.

Do I dare to dream of the possibility that just one of these CEOs, or a board member of one of the tobacco companies could one day accompany me as I visit a bereaved family; that they, too, could hear their story; and maybe, just maybe, a glimmer of compassion could be awakened in their heart?

[1] Blair, P. S., et al. (2009). “Hazardous cosleeping environments and risk factors amenable to change: case-control study of SIDS in south west England.” BMJ 339: b3666.

[2] Gornall, J. (2015) Slaying the Dragon: how the tobacco industry refuses to die. BMJ 2015;350:h2052

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