FREQUENTLY ASKED QUESTIONS
What is SUDC?
Sudden Unexplained Death in Childhood (SUDC) occurs in children between 1 and 18 years of age. The cause of death remains unexplained after thorough case investigation including post-mortem and examination of the child and family’s medical history.
SUDC is a diagnosis of exclusion, in other words, a diagnosis of SUDC is made when other causes of death are not identified.
Is SUDC like SIDS? (Sudden Infant Death Syndrome)
SUDC is similar to SIDS in that it occurs in otherwise healthy children most often during sleep and has no known explanation. There may be other similarities, but research on SUDC is in its early stages and more is needed to better understand how similar or different the underlying causes are.
The biggest difference we know is that a child’s death may be certified SIDS or ‘SUDI’ (Sudden Unexpected Death in Infancy) only before he or she is twelve months old. A child’s death may be certified as SUDC if he or she is over one years old, but under the age of nineteen (i.e. between 1-18). Another important difference is that there is currently nothing parents can do to mitigate the risk of SUDC. Research into SIDS has resulted in important ‘safer sleep’ guidance. More research into SUDC is crucial to determine whether there is anything that can be done to protect these older children from dying without reason.
Is SUDC something new?
SUDC is not new, but it is rare. Its incidence is about 1 death per 100,000 children. Based on 2018 statistics provided by ONS for England and Wales 40 children ages one-eighteen years were affected by SUDC. This includes 22 children ages one-four years as SUDC most commonly affects toddlers.
To put this in context, in 2016 there were 446 one-four year old deaths in England and Wales. 5.6% of these were sudden unexplained deaths, more than deaths due to fires or drowning.
What causes SUDC?
By definition the cause of death in these children is unknown.
SUDC is a category of death determined only after thorough review of the medical history of the child and their family, evaluation of the scene where the child was discovered, and the post-mortem examination. The terms ‘Sudden Unexplained Death in Childhood’ or ‘unascertained’ are sometimes used when an accurate cause of death cannot be found.
Can SUDC be predicated or prevented?
No. At the present time, there is not enough known about the underlying mechanisms of death in SUDC to allow predication of which children might die. This means that currently there is no way to prevent SUDC.
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. In the meantime, families should follow the current NHS recommendations regarding child health.
Is SUDC inherited?
We do not know the answer to this question. We do know that some rare causes of sudden death are associated with genetic predisposition. For example, some cardiac channelopathies. This is one of the many reasons that SUDC UK advocates for comprehensive investigations for all sudden unexpected deaths and the screening of family members in the United Kingdom. For more information please see our advice on family screening.
As our overall understanding of genetics improves, we hope to determine if there are genetic variations in some SUDC children that may predispose them to a vulnerability that was previously unknown. This type of discovery could lead to the screening of at risk children and the provision of appropriate medical care.