December 8th 2022 marks the publication of a ground-breaking report from the National Child Mortality Database (NCMD): Sudden and Unexpected Deaths in Infancy and Childhood.

This report uses the unique data submitted by Child Death Overview Panels around England to investigate sudden and unexpected deaths both among infants (0-12 months) and older children (1-17 years) and draws out learning and recommendations for service providers and policymakers. It is a result of a strong collaboration between scholars at the University of Bristol, medical practitioners, SUDC-UK, The Lullaby Trust, and Elliot’s Footprint, and is the first time data has been collected nationally about all unexpected child deaths. It shows that many of these remain unexplained. The report also includes personal stories and pictures very generously provided by affected families and we are deeply grateful for their support. 

 

FUNDRAISING INFORMATION

 Of 6,503 deaths notified to NCMD during the two-year period, 19% (1234/6503) presented suddenly and unexpectedly with no immediately apparent cause. Of these, 42 % (523/1234) where children 12 months and older.  We are here in support for any family who experiences such a tragedy. Families can be referred to SUDC UK immediately if you think we could help, there is no need to wait until the cause of death has been determined. 

Nikki Speed, CEO of SUDC UK and an author on the report said “This data is so important to our mission to better understand and prevent Sudden Unexplained Death in Childhood. There is currently nothing that can be done to stop children dying this way and by examining information within a national population, we gain crucial, real-life insight within this geography: Who is being affected? What type of information is being collected? Does analysing this data reveal any information which could help save lives, inform future work or improve care for families?

We are so delighted that this report shines a light on the need to specifically prioritise research into SUDC, recommends improved national medical education, improved agency communication and better care for families. The findings should now be used to influence training and policy and draw much-needed attention and urgency to this important cause.”

Of the sudden and unexpected deaths in 2020 that had been investigated and reviewed, 16% (n=32/204) were classified as unexplained. The association between seizures and sudden unexpected deaths reported in previous studies (including the largest database of SUDC cases, the SUDCRRC) is corroborated, as 27% (8/30) of children who died without explanation had a history of convulsions. We are hopeful that this report will provide greater awareness and more urgency in understanding exactly which of the many children who are affected by seizures are at risk, and expediate a review of the public information on febrile seizures.

 

 The report did not identify a strong association with deprivation or the modifiable factors which are known to be significant for infant death. However, sudden and unexpected child deaths in this age group were still highest in the most deprived neighbourhoods and we intend to take this seriously and use this and other knowledge gained from the report to inform SUDC UK’s work moving forwards. The data also showed that an equal number of boys and girls were affected by SUDC, which is interesting as previous research usually indicated a slightly higher male proportion.

Professor Peter Fleming, a lead author on the report and Professor of Infant Health at the University of Bristol, said: “This report represents a new milestone in responding to sudden and unexplained deaths. It’s the first national report to look at a population level at all those deaths – infants and children, those that remain unexplained and those where the causes become clear with time. It shows us more clearly than ever the need to ensure that infants sleep safely, that unexplained deaths in older children are better understood, and that support is given to make sure all families – especially the poorest – can create a safe environment for their children.”

Baroness Kennedy KC, who chaired creation of the original investigation protocol for these deaths, said: “What this tells us is that research in this area is now a priority. It is crucial that we identify those factors which contribute to unexpected death in children over one year old.”

Founded by bereaved parents, SUDC UK understands that each statistic in this report is a loved child, a child that lived and laughed and is deeply missed. We understand how some may find the report interesting and see positivity in the progressed learning and attention, others may find it difficult or upsetting. SUDC UK are very grateful that the Lullaby Trust have agreed to host a webinar in collaboration with NCMD and the other authors so that families can hear an expert unpack the key findings and recommendations. At the end of the presentation there will be lots of time to ask questions to the panel of authors, including Nikki Speed.