SUDI: the bitterest loss

07 November 2018

The number of unexpected and unexplained infant deaths has plummeted since the 1990s, but making further reductions now requires more intense and targeted work, writes journalist John Windell.

Sudden unexpected death in infancy (SUDI) is defined as the sudden and unexplained death of an infant that had not been considered as a reasonable possibility in the previous 48 hours. It accounts for around 230 cases each year in the UK (Lullaby Trust, 2018a). Approximately two-thirds of SUDI cases remain unexplained and are often classified as sudden infant death syndrome, or SIDS (Garstang and Sidebotham, 2018).

In 1989, there were 1545 SIDS cases, then more commonly known as cot death, in the UK (Lullaby Trust, 2016). SIDS became headline news in 1991 when the four-month-old son of TV presenter Anne Diamond died in his sleep.

But this individual tragedy would prove to be a turning point, as Anne launched herself into a mission to find out more about the causes of SIDS and how to prevent it.

Drawing on this impetus, and on key research from New Zealand and the Netherlands that found babies who slept on their front were at much greater risk from SIDS (subsequently confirmed by the work of Professor Peter Fleming at the University of Bristol), the Lullaby Trust, a charity set up to prevent SUDI, launched its Back to Sleep campaign at the end of 1991 with the full support of the Department of Health.

Since then, the rate of SIDS in the UK has fallen by almost 80%, with the number of babies dying reaching a new low of 216 in 2015 (Lullaby Trust, 2018b). Even so, the most recent figures from the Office for National Statistics (ONS) show that there is still work to be done, as the number of deaths in England and Wales rose from 195 in 2015 to 219 in 2016 – an 11% increase (ONS, 2018). Nobody knows why, but a similar small spike occurred in 2013.

A study from the University of Warwick earlier this year also provided an insight into the causes of SUDI in England. Its analysis of serious case reviews (SCRs) after SUDI revealed a core of underlying factors that may prove harder to crack – domestic violence, mental health problems and substance misuse. It also found that most cases happened when parents who had been drinking or taking drugs slept alongside the child, while others occurred after a sudden change in family circumstances (Garstang and Sidebotham, 2018).  

Deaths among infants under two years old are categorised as either expected or unexpected. SUDI covers all unexpected deaths, whether explained or unexplained. Explanations for unexpected deaths include congenital issues such as heart defects, sudden illnesses, accidents and infanticides. But if a death remains unexplained, it is usually classified as SIDS.

Social deprivation and sudi

‘After investigation, the cause of death will be found in about a third of cases,’ says Dr Joanna Garstang, lead author of the report, consultant community paediatrician and clinical associate professor at Warwick Medical School. ‘The baby might have had pneumonia or a metabolic problem that wasn’t known about, but two-thirds remain unexplained.’

Joanna says that safe-sleep campaigns and screening have been key to the decline of SIDS and SUDI over the past couple of decades, but adds that the fall in the number of parents who smoke – a known risk factor – has also been important. ‘That strong public health message has made a huge difference. Also hidden among SUDI were some cardiac and metabolic causes of death that are now routinely screened for. But overall the demographic for SUDI has changed. Back in the 1990s, it was about 50% socially deprived families and 50% other families. Now it is over 80% socially deprived.’

The study looked at 27 of the 30 SCRs carried out in England between 2011 and 2014, and Joanna says the results from these can easily be extrapolated to other cases that won’t have triggered an SCR. ‘For example, the problem of alcohol and co-sleeping is something you see frequently in SUDI deaths. Between a quarter and half of the deaths that I see through my clinical practice are where alcohol or drugs and co-sleeping have taken place.’


Know the message

For Joanna, the solution is for healthcare professionals to push safe-sleep messages during every contact they have with families with small babies, but also to move the dialogue on a bit. ‘Even for parents who don’t smoke, drink alcohol or use drugs, there is still a small risk with co-sleeping. We sometimes worry about talking about it, because we don’t want to upset healthy families. But there’s a danger this gives out a mixed message to vulnerable, high-risk families where drinking, smoking and drugs are issues. They should never co-sleep. For them, the message is that they must find somewhere safe for the baby to sleep every night. We don’t need to target the healthy families, we need to target the vulnerable ones.’

These vulnerable families can be difficult to work with, and that’s a key reason why the rump of SUDI and SIDS cases are now proving much harder to prevent. ‘These families may not be open to health visitors about their smoking and drinking,’ says Joanna. ‘They can be mobile and don’t engage with services. They are the hard-to-reach.’

Jenny Ward, director of services at the Lullaby Trust, says healthcare professionals still need to hammer home the key messages: ‘Babies should sleep on their backs, in a separate cot, away from smoking environments. There is other good preventative advice, such as breastfeeding and not sleeping on a sofa with a baby. But we know these three key messages work.

‘The majority of babies who die today have multiple known risk factors. So our battle now is not trying to find out what those risk factors are, but how we can get families to follow our advice.’

Sudi iStock
Safe sleep: dos and don’ts  

Do ✔

  • Place a baby on its back to sleep
  • Keep a baby away from cigarette smoke during pregnancy and after birth
  • Give a baby a separate cot or Moses basket to sleep in, in the same room as the parents for the first six months
  • Breastfeed
  • Use a firm, flat, waterproof mattress.  

Don’t ✘

  • Sleep on a sofa or in an armchair with a baby
  • Sleep in the same bed as a baby if you smoke, drink or take drugs, or if the baby was born prematurely or with a low birthweight
  • Let a baby get too hot
  • Cover a baby’s face or head while it sleeps, or use loose bedding.

The Lullaby Trust, 2018c

Spread the word

Health visitors have a role to play beyond understanding the major risk factors, such as mothers who smoked in pregnancy, parents who continue to smoke, babies born preterm or who were small at birth, and alcohol and drugs.

‘Those risks are always going to be there,’ says Jenny. ‘So it’s not just about spotting them, but also about identifying the families that don’t know about the risks or don’t understand them.’

The Lullaby Trust trains professionals who find themselves in such situations, including health visitors, in how to conduct conversations. ‘Much of our training focuses on how to talk with the families that can be hard to engage with, and what kind of questions to ask. It might be “Where does the baby sleep?” followed by “Can you show me where the baby slept last night?” then working through the other answers.’

Jenny also says that the high-risk families tend to be those already known to health visitors and other professionals. ‘I don’t think this is a new group as such, but they are definitely the ones we need to target.’

Because the circumstances in which babies die are much better understood, the Lullaby Trust has focused more in recent years on targeting its messages, simply and directly, at those vulnerable, hard-to-reach families that need to hear them most. It has also concentrated its efforts in the geographical areas 
with the highest rates of deaths – Wales, Yorkshire and the Humber, and pockets in London – and has been working closely with younger parents, who have higher rates of SUDI and SIDS than older parents.

Joanna adds a postscript about the factor of unplanned circumstances, which was another key point to come out of the Warwick study. ‘It can help to encourage parents to plan ahead, if they aren’t going to be in their own home for whatever reason, getting them to think about where the baby is going to sleep,’ she says. ‘Regular contact with a professional they trust can make a genuine difference, as can giving them the same message over and over again. It has to be a clear message that if you are going to drink, smoke or take drugs, you mustn’t co-sleep.’ 



Image Credit | iStock


Garstang JJ, Sidebotham P. (2018) Qualitative analysis of serious case reviews into unexpected infant deaths. Archives of Disease in Childhood (published online). See: adc.bmj.com/content/early/2018/05/25/archdischild-2018-315156.info (accessed 15 October 2018).

Lullaby Trust. (2018a) SIDS & SUDC facts and figures. See: lullabytrust.org.uk/wp-content/uploads/Facts-and-Figures-for-2015-released-2017.pdf (accessed 15 October 2018).

Lullaby Trust. (2018b) Statistics on SIDS. See: https://www.lullabytrust.org.uk/professionals/statistics-on-sids (accessed 15 October 2018).

Lullaby Trust. (2018c) Safer sleep advice. See: https://www.lullabytrust.org.uk/safer-sleep-advice (accessed 16 October 2018).

Lullaby Trust. (2016) Evidence base. See: lullabytrust.org.uk/wp-content/uploads/Evidence-Base-2016.pdf (accessed 15 October 2018).

Office for National Statistics. (2018) Unexplained deaths in infancy: England and Wales: 2016. See: ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/unexplaineddeathsininfancyenglandandwales/2016 (accessed 15 October 2018).

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