Sudden Death Among Infants and Children With Epilepsy is Higher Than Expected: Study

The findings of a new study suggest the rate of sudden death among infants and children with epilepsy is much higher than prior research has suggested, with Black or multiracial children facing a particularly high risk.

The medical term “sudden unexpected death in epilepsy”, or SUDEP, occurs when an otherwise healthy individual with epilepsy dies suddenly, typically when they are asleep or at rest. SUDEP is considered a significant problems for adults with epilepsy, but prior research has suggested that children have a much lower risk.

In a study presented virtually at the American Epilepsy Society AES2020, researchers indicate the prevalence among infants and children was higher than expected.

Researchers used data from the National Institutes of Health/Centers for Disease Control and Prevention Sudden Death in the Young Case Registry, to conduct a large national study including children and infants who died suddenly and unexpectedly of natural causes like sudden cardiac arrest, SUDEP, and sudden infant death syndrome (SIDS). It excludes those who died by trauma, terminal illness, homicide, suicide, and intentional overdose.

The study included data on 1,769 infants and children from birth to 17 years old who died in nine U.S. states between 2015 and 2017.

Overall, 3% of children were categorized with SUDEP and 1% as possible cardiac death/SUDEP. Of the sudden death in epilepsy cases, 73% occurred in children younger than 14 years old.

Sudden unexpected death in epilepsy was more common in infants and children than previously reported. In addition, they found that Black and multiracial children have a higher risk of suffering unexpected death.

The study data indicates the mortality rate for SUDEP among infants and children was 0.26 per 100,000 live births, 63% higher than previously reported at 0.16 per 100,000 births.

The SUDEP death rate was 1.5 times higher among non-white infants and children than white infants and children. The mortality rate for Black and multiracial infants was 0.32 per 100,000 live births, but 0.22 per 100,000 for white infants.

“Physicians often don’t discuss SUDEP with parents because they consider it rare and don’t want to frighten them,” wrote Vicky Whittemore, Ph.D., lead author and program director at the National Institute of Neurological Disorders and Stroke (NINDS), Bethesda, Md. “But it’s important physicians who have young patients discuss the risk with parents.”

Research presented at conferences are considered preliminary until published in a peer reviewed journal.