Sudden Unexpected Death in Epilepsy More Prevalent in Black and Multiracial Children

Findings from a large national registry presented virtually at the American Epilepsy Society AES2020 revealed that sudden unexpected death in epilepsy (SUDEP) is more common in infants and children than previously reported. The population-based study—the first of its kind in the US—found that rate of SUDEP was 0.26 per 100,000 live births, a 63% higher rate than previously reported. Black and multiracial infants and children were 1.5 times more likely to die from SUDEP than white infants and children. 

The findings are based on data from the National Institutes of Health/Centers for Disease Control and Prevention Sudden Death in the Young (SDY) Case Registry, which includes infants and children who died suddenly and unexpectedly of diseases such as sudden cardiac death, SUDEP, and sudden infant death syndrome (SIDS).  

Using data from the registry, researchers analyzed 1,769 infants and children (0 years of age to 17 years of age) who died in 9 US states between 2015 and 2017. They categorized 55 (3%) as SUDEP and 13 (1%) as possible cardiac death/SUDEP. Of the children identified as having died of SUDEP, 40 (73%) were less than age 14. Of those who died from SUDEP, 6 (11%) were Hispanic/Latinx, 16 (29%) were Black or multiracial, and 32 (58%) were white. The SUDEP mortality rate was 0.22 per 100,000 for white infants and children and 0.32 per 100,000 in Black and multiracial infants and children. 

“While SUDEP is traditionally considered a more significant issue in adults, these findings add to the growing research that it is more common in infants and children than we believed, particularly for certain groups,” said Vicky Whittemore, PhD, program director, National Institute of Neurological Disorders and Stroke (NINDS). “Physicians often don’t discuss SUDEP with parents because they consider it rare and don’t want to frighten them. But it’s important physicians who have young patients discuss the risk with parents. This ongoing research is focused on understanding the underlying causes of SUDEP, the risk factors involved, and how the brain changes over time in people with chronic epilepsy, which can contribute to SUDEP. Based on this information, prevention strategies can be developed and disseminated.”