Opinion

SUDC: every one a tragedy

21 May 2021

Chief executive of SUDC UK Nikki Speed shines a light on sudden unexplained death in childhood and how to support families devastated by their loss.

Despite the fact that 40 healthy children die suddenly and without any explanation every year in the UK, sudden unexplained death in childhood (SUDC) is one of the most under-recognised medical tragedies of our time (Lullaby Trust, 2020; SUDC UK, 2018a; SUDC UK, 2018b; Office for National Statistics [ONS], 2020). This limited awareness even extends to the medical and research community. Many paediatricians are unfamiliar with SUDC, as publications focused on this category of death are rare, and medical education focused on SUDC is inconsistent.  

What is SUDC?

SUDC is the sudden and unexpected death of a child aged between one and 18, which remains unexplained after a thorough investigation is conducted. This investigation must include an examination of the death scene, a post-mortem and a review of the child and family’s medical history. Most often, a seemingly healthy child goes to sleep and never wakes up. Currently, we do not know what causes SUDC, how to predict it or how to prevent it (Krous et al, 2005).

SUDC is most prevalent in toddlers and children in their late teens. The lack of awareness is partly because SUDC is rare: based on statistics from the ONS, it is estimated to affect approximately 40 children each year in England and Wales (ONS, 2020). However, this is greater than the number of childhood deaths due to fires or drowning, which receive public funding and awareness campaigns to aid prevention (NORD, 2020; Home Office, 2017; SUDC UK, 2018a; SUDC UK, 2018b; SUDC Foundation, 2018). SUDC research would benefit from targeted funding and public health attention in the UK to improve awareness.


My personal journey to co-founding SUDC UK

Rosie was my gorgeous and happy second child: a healthy, loved and thriving two-year-old. She was born full term and had no noteworthy medical history. Rosie was fit and well the day before her death in 2013, just a bit quiet in the afternoon, as if a cold were imminent. We checked on her before we went to bed and she seemed fine; yet in the morning we woke to find her dead and her death was later classified as SUDC. We still do not have any answers as to why Rosie died. We now know that our story is very similar to that experienced by others affected by SUDC. Following Rosie’s death we were dumbfounded by the lack of awareness of SUDC and absence of a national organisation.

In 2017 I co-founded SUDC UK, a registered charity in England and Wales, with two other bereaved mothers.


Can SUDC be predicted or prevented?

Sadly, the answer at this time is no.

Through research, it is our hope that we will be able to discover the risk factors and underlying causes of SUDC that will lead to its prevention. It is likely that there are multiple underlying causes of SUDC, rather than one unifying cause.

In comparison, research into sudden infant death syndrome (SIDS) provides both inspiration and confidence for a brighter future. SIDS is different to SUDC because it affects babies under 12 months and although they are both terms used for an unexplained, sudden death, one important difference is that research into SIDS has identified risk factors and developed important ‘safer sleep’ guidance for babies. The result is a significant reduction in deaths since the 1990s (Duncan et al, 2018). In striking contrast, there is currently nothing parents can do to mitigate the risk of SUDC. More research into SUDC is crucial to determine whether there is anything that can be done to protect older children from dying without reason.

With clear, compassionate communication, you could have a positive impact on how a family copes

Hope for the future

Our vision is for SUDC to be predictable and preventable, and our mission is to raise awareness and fund vital research to better understand and ultimately prevent these tragedies. SUDC UK provides information and resources for families and professionals, and brings together affected families.

Given the traumatic nature of sudden death and the impact of having a healthy child die with no obvious explanation, immediate, tailored emotional support for families is essential. SUDC UK proudly links registered families with our global partner, the SUDC Foundation, which serves more than 1000 families across the world at no cost. Together, SUDC UK and the SUDC Foundation help families navigate the child death process and advocate for them if they choose to embark on the difficult journey of family screening, further investigation and enrolling in research.


Key facts  

  • Sudden unexplained death in childhood (SUDC) is the sudden and unexpected death of a child aged between one and 18. The death remains unexplained after a thorough investigation is conducted.  
  • Most often, it occurs in seemingly healthy children during sleep.  
  • SUDC is a ‘category of death’, not a cause of death and there are most likely multiple reasons why these children are dying.  
  • Sadly, at this time, we do not know what causes SUDC and medical professionals do not know how to predict or prevent it.

How you can help affected families

Parents who experience this sudden and unexpected death are likely to have never heard of SUDC and will look to professionals for information. Due to your close contact with young families, community practitioners are well positioned to provide tremendous comfort to those facing both the devastation of sudden death, and the confusion and guilt that arises from the lack of an obvious explanation.

In line with recent guidelines, you may find yourself tasked as a ‘key worker’ for a family, acting as a liaison between professionals during this overwhelming time, keeping them informed as the investigation progresses (HM Government, 2018). With clear, compassionate, proactive and regular communication, you could have a positive impact on how the family copes.  

Please refer families to SUDC UK as soon as possible so they can access our resources, including support services from the SUDC Foundation. For example, bereavement support is available from the SUDC Foundation, while information and further resources is available from SUDC UK’s website, including guidance to help a family through the process following a death. Even if the death is explained later, our charities can provide resources and reassurance that they are not alone.    

Nikki Speed PhD is the co-founder and chief Executive of SUDC UK, remembering Rosie and all the loved and missed children affected by SUDC.


Resources  

  • For information, family referral and professional newsletter registration, visit sudc.org.uk  
  • If you are supporting a family, please see sudc.org.uk/professionals and read the Caring for an SUDC Family guide  
  • For our global partner organisation, the SUDC Foundation, visit sudc.org  
  • To read the statutory and operational guidance following a child death, visit bit.ly/ENG_guidelines

Time to reflect

Could your local team benefit from an education session from SUDC UK? Contact us to see if we can help, and join the conversation on Twitter @SUDCUK1 and @commprac using the hashtag #SUDCAwareness.


References:

Duncan JR, Byard RW. (2018) SIDS Sudden infant and early childhood death: The past, the present and the future. University of Adelaide Press: South Australia.    

HM Government. (2018) Child death review: statutory and operational guidance (England). See: assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/859302/child-death-review-statutory-and-operational-guidance-england.pdf (accessed 8 April 2021).   

Home Office. (2017) Fire prevention and protection statistics: England, April 2016 to March 2017 Statistical Bulletin 19/17. See:  assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/654741/fire-prevention-protection-1617-hosb1917.pdf (accessed 8 April 2021).  

Krous HF, Chadwick AE, Crandall L, Nadeau-Manning JM. (2005) Sudden unexpected death in childhood: a report of 50 cases. Pediatric and Developmental Pathology 8(3): 307-19. 

Lullaby Trust. (2020) SIDS & SUDC facts and figures. See:  lullabytrust.org.uk/wp-content/uploads/Facts-and-Figures-for-2018-released-2020.pdf (accessed 8 April 2021). 

NORD. (2020) Rare disease database. See:  rarediseases.org/rare-diseases/sudden-unexplained-death-in-childhood (accessed 8 April 2021).  

Office for National Statistics. (2020) Unexplained deaths in infancy, England and Wales: 2018. See: ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/unexplaineddeathsininfancyenglandandwales/2018 (accessed 8 April 2021).  

SUDC UK. (2018a) Sudden unexplained death in childhood. See: sudc.org.uk (accessed 8 April 2021).  

SUDC UK. (2018b) SUDC facts & statistics. See: sudc.org.uk/sudc-facts (accessed 8 April 2021). 

SUDC Foundation. (2018) Facts about sudden unexplained death in childhood. See: sudc.org/facts-statistics (accessed 8 April 2021). 

UN Women UK. (2021) Prevalence and reporting of sexual harassment in UK public spaces: a report by the APPG for UN Women. See: https://www.unwomenuk.org/site/wp-content/uploads/2021/03/APPG-UN-Women-Sexual-Harassment-Report_Updated.pdf (accessed 21 April 2021).

 

 

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