The older brother of SIDS, sudden unexplained death in childhood (SUDC) is the death of a child aged 12 months or older that remains unexplained after investigation, including an autopsy. According to the Centers for Disease Control and Prevention (CDC), SUDC affects approximately 400 children aged 1 to 18 years annually.
Since it is much less common than SIDS, SUDC is not typically incorporated into the educational curriculum of pediatric doctors, nor is something medical examiners evaluate often enough to formulate a comprehensive understanding. Seeing a need and blank canvas, the SUDC Foundation—the only organization committed to advocating for and increasing research into SUDC—recently funded a grant to develop and publish the first national consensus guidelines for SUDC.
“The death investigation system in our country is variable, comprising coroner and medical examiner systems in most areas,” pediatrician Erin Bowen, MD, FAAP, who is on the Board of Directors for the SUDC Foundation, writes in Contemporary Pediatrics. “It is faced with challenges that include a lack of resources, a shortage of forensic pathologists, and, until recently, lack of procedural guidance, particularly for pediatric deaths. The lack of standardization for death investigation has far-reaching implications, including the resultant effects on the family as well as public health ramifications. Without standardization, accurate surveillance of these deaths is elusive.”
In January 2020, an expert panel of over 30 multidisciplinary contributors from across the country came together to publish “Unexplained Pediatric Deaths: Investigation, Certification and Family Needs.” The book discusses the changing philosophies and medical theories surrounding SUDC, and offers procedural guidance for investigation, autopsy and ancillary testing, certification and reporting of these deaths. It also promotes consistent classification of deaths in order to understand how often they occur.
The publication’s expert panel could be described as the epitome of multidisciplinary—medical examiners, pediatricians and federal agency experts in death investigation, autopsy performance, certification, clinical subspecialties (pediatrics, neurology, cardiology, child abuse, injury prevention, infectious diseases, genetics, and metabolic diseases), family needs, prevention and epidemiology.
“This book is a monumental achievement in pediatric forensic pathology. The mere idea that 30+ authors worked together across multiple specialties and agreed upon the contents in this book is amazing. Finally, practicing forensic pathologists have practice recommendations to follow, and achieve when they have an apparently unexplained infant/child death to investigate,” said a Canadian neuropathologist who reviewed the textbook.
Indeed, the book offers recommendations and guidelines for autopsy specimen collection and ancillary tests/studies. There is also a helpful process flow chart that incorporates responsibilities for law enforcement, medical examiners/coroners and medicolegal death investigators. Recommendations for prevention strategies are offered as much as possible, as well as suggestions regarding the direction of future research efforts.
Bowen, who herself experienced the sudden unexpected death of her 17-month-old son, agrees more research is vital. In her Contemporary Pediatrics article, she pointed to a recent study from JAMA Network Open that found significantly increased rates of febrile seizures among children whose death was attributed to SUDC.
“This is one area where future research could be helpful to better identify at-risk children. Similarly, the grief responses and needs of families after the death of older children have not been studied as extensively as infant death. With more research into these areas, we can build upon these guidelines to provide improved, data-driven approaches to the care for families affected by SUDC,” Bowen writes.
SUDC is the fifth-leading category of death in children 1 to 4 years of age.