Florencia had only heard of SUDC, or Sudden Unexplained Death in Childhood, from a pediatrics podcast episode called Peds RAP, a few months earlier This faint familiarity allowed the couple to connect with the Robert’s Program at Boston Children’s Hospital, led by Dr Richard Goldstein. She elaborates, “We quickly arranged for Rosie's tissues, including her brain and blood, to be preserved for research and genetic sequencing prior to discharge to the funeral home
This critical step is often missed because families and physicians are unaware of this diagnosis, the research options that exist, and are unprepared for the tight timeline involved while planning a funeral and grieving an unimaginable loss ” Most people, including physicians, haven’t ever heard of this condition
