Recorded May 13, 2024

Leading NYU researchers, Laura Gould and Orrin Devinsky, discussed their new research linking seizures, including febrile, to early childhood deaths.  Sudden Unexplained Death in Childhood (SUDC) is the unexpected death of a child on or after their first birthday that is unexplained following a comprehensive investigation. More than half of these deaths occur in toddlers, aged 1-4 years of age and about 1/3 are associated with a past medical history of febrile seizures. Almost all SUDC deaths are sleep related and unwitnessed so the NYU team sought to better understand possible mechanisms of death by reviewing videos of  some children during their last sleep period. Importantly, they found that some children passed away after having a convulsion in sleep. Justin Fell and Katie Czajkowski-Fell shared their story of their son Hayden and their experience in research enrollment with NYU’s SUDC Registry and Research Collaborative. Pediatric epilepsy specialist, Dr. Elizabeth Donner, moderated the webinar as the panelists describe their study and its implications for future research and clinical care such as post-infancy sleep guidelines.