Increasing Awareness of Sudden Death in Pediatric Epilepsy Together.

Abstract

* Abbreviation: SUDEP — : sudden unexpected (or unexplained) death in epilepsy persons The death of any child is tragic. When the death is sudden and unexpected, it can seem especially incomprehensible. Henry was 4 years old when he died only a few weeks after his epilepsy diagnosis; his parents were devastated and never knew that death could occur; no physician had discussed the possibility with them. Henry was an otherwise healthy child, had a history of febrile seizures, and died in his sleep before his epilepsy workup was complete and before his medication was likely therapeutic. Since Henry’s death 8 years ago, together and independently, Henry’s parents, pediatrician, and neurologist have sought understanding and opportunities to advance awareness and prevention around epilepsy-related mortality. These efforts have launched a multidisciplinary partnership between Children’s National Health System and the University of Virginia to develop an educational research program to systematically raise provider and patient awareness of sudden unexpected (or unexplained) death in epilepsy persons (SUDEP) and other risks associated with epilepsy. This article gives voice to these different experiences and underscores the value of families and providers working together to improve care and prevent death. Although epilepsy is a common childhood disorder, all of us were impacted by Henry, who died, suddenly and unexpectedly, as a result of his seizure disorder. Our partnership started with Henry’s mother, Henry’s pediatrician, and Henry’s neurologist and now includes an educational research program that incorporates parent advocacy, nursing, neuropsychology, psychiatry, neurology, and basic science expertise. As a bereaved mother, I was desperate to make sense out of our tragedy. I searched for understanding and connection to others who shared my experience and ultimately connected with other parents … Address correspondence to Madison M. Berl, PhD, Center for Neuroscience, Children’s National Health System, 111 Michigan Ave NW, Washington, DC 20010. E-mail: mberl{at}childrensnational.org