The death of a child is an unnatural event, defying life’s natural order. When the death is sudden and unexpected, there can be added trauma for parents, siblings, and extended family members as the entire family dynamic has changed.
At the AAP 2019 National Conference and Exhibition, Richard Goldstein, MD, addressed this important topic in a session titled “Supporting families after the sudden unexpected death of a child.” As Dr. Goldstein highlights, the pediatrician has a unique role to play in meeting the complex medical and psychosocial needs of the family. However, our training has not adequately prepared us for how to support families after these deaths.
When a child dies suddenly and unexpectedly, the family is faced with a multitude of professionals and agencies, including first responders, law enforcement, emergency department providers, child protective services, and medical examiners. The pediatrician can act as a liaison between these professionals and the family. In providing support for families, it is important for pediatricians to recognize that grief is not linear and that the families’ needs may change over time.
When the child is aged older than 1 year, there is the added challenge that there is limited awareness of the category of death of sudden unexplained death in childhood (SUDC), which is the sudden and unexpected death of a child aged between 1 and 18 years that remains unexplained after a thorough investigation including autopsy. It affects approximately 400 children annually and is the fifth-leading category of death in children aged 1 to 4 years. However, most of the research in sudden death in Pediatrics has focused on infant deaths. As a result of this lack of awareness, pediatricians may be unaware of how to connect families with important resources such as the SUDC Foundation (sudc.org).
In recognition of the need for more consistent investigations and the need for guidance for medical professionals handling these deaths, the SUDC Foundation provided a scientific grant for a collaboration between the AAP and the National Association of Medical Examiners to form consensus guidelines for sudden deaths in Pediatrics titled “Unexplained pediatric deaths: Investigation, certification, and family needs.” These guidelines, which will be published in January 2020 and available online (sudpeds.com), represent an important step in improving care to families affected by sudden pediatric deaths.
The consensus guidelines and Dr. Goldstein’s session are significant steps to addressing the gap in our education around supporting families after pediatric deaths and encouraging pediatricians to remember that their role as the child’s pediatrician should not end with the child’s death.
Erin Bowen, MD, is a pediatrician in practice in Ansonia, Connecticut. She is a member of the American Academy of Pediatrics (AAP) and a member of the AAP Section on Child Death Review and Prevention. She is also a member of the Sudden Unexplained Death in Childhood (SUDC) Foundation Board of Directors, working on the foundation’s Medical Education Initiatives, with a goal of increasing medical education of SUDC to professionals at the forefront of care for affected families.