15 Mar The Story of SUDC
One of the most common questions when people first hear the term SUDC is “What is that?” The second usually is “Is this something new?”
Sudden Unexplained Death in Childhood (SUDC) is a category of death in children between the ages of 1 and 18 that remains unexplained after a thorough investigation, including an autopsy. A medical examiner or coroner could rule a child’s death SUDC when s/he completes a thorough evaluation and finds no other cause of death.
Naming the nameless
SUDC is not new, but it is newly-recognized.
In 1999, a small group of parents whose toddlers died without explanation attended a presentation at the SIDS Alliance national convention in Atlanta, GA. The presentation, by Dr. Henry Krous, was entitled “Post-Infancy SIDS – Is it on the rise?” Following the presentation, Krous agreed to review the records of the children of the families in attendance to learn more about them. Over the following two years, more families with similar stories were connected. Krous and Laura Gould Crandall then co-founded the San Diego SUDC Research Project, the first U.S. study to specifically investigate sudden, unexplained deaths of children 12 months and older. The study continued until 2012 and the term “SUDC,” and its definition resulted.
Creating the SUDC Foundation
At the same time, Gould Crandall, a neurological physical therapist by training, partnered with fellow SUDC mother Chelsea Hilbert, an emergency room social worker by training, to conceptualize The Sudden Unexplained Death In Childhood Program. The CJ Foundation for SIDS agreed to support this new program and it was officially created in the fall of 2001. The SUDC Program was created to be a centralized resource for SUDC; providing information, support, advocacy and research.
With each year, the program grew to provide more services to more families with increasing needs and raised more and more funds to raise awareness of SUDC and support research. In 2014, Gould Crandall partnered with another fellow SUDC mother, Lorri Caffrey, as well as neurologist Dr. Orrin Devinsky and nonprofit management expert Jim Lintott to establish the SUDC Foundation as an independent, nonprofit health organization. Its mission is to raise awareness, fund research, and serve those affected by sudden unexpected or unexplained death in childhood.
Since 2001, the SUDC Program and Foundation have served over 900 families in 18 countries worldwide. They have also awarded over $1.8 million in grants to serve the SUDC community and support SUDC research. One grant helped to establish the SUDC Registry and Research Collaborative (SUDCRRC) in 2014. Under the leadership of Devinsky at NYU Langone Health, the SUDCRRC is a first-of-its kind collaborative of New York University, Columbia University, the Mayo Clinic and forensic pathologists dedicated to understanding SUDC and researching possible ways to prevent it. The SUDC Foundation also awarded a grant to the National Association of Medical Examiners (NAME) to work collaboratively with the American Academy of Pediatrics (AAP) to investigate and establish national practice guidelines surrounding the investigations of sudden unexpected deaths in infants and young children and determine research needs and the sensitive care of families affected.
In 2017, a medical journal, the Lancet Child and Adolescent Health, published an article written by Devinsky and Gould Crandall highlighting the dire need for research and public awareness of SUDC, marking another major accomplishment for a public health issue that had been unnamed just 13 years prior.
The story of SUDC is young, but we work every day in the hope of finding a happy ending – the eradication of unexplained death in children.
Krous HF, Chadwick AE, Crandall L, Nadeau-Manning. Sudden Unexpected Death In Childhood: A Report of 50 Cases. Pediatric Dev Pathol. 2005;8:307-319
Hannah C. Kinney, M.D., Amy E. Chadwick, B.A., Laura A. Crandall, M.A., Marjorie Grafe, M.D., Dawna L. Armstrong, M.D., William J. Kupsky, M.D., Felicia L. Trachtenberg, Ph.D., and Henry F. Krous, M.D. Sudden Death, Febrile Seizures, and Hippocampal and Temporal Lobe Maldevelopment in Toddlers: A New Entity Pediatr Dev Pathol 2009 Jul 16:1. Epub 2009 Jul 16
Krous HF, Wahl C, Chadwick AE. Sudden unexpected death in a toddler with Williams Syndrome. Forens Sci Med Pathol. In Press.
Kinney HC, Armstrong DL, Chadwick AE, et al. Sudden Death in Toddlers Associated with Developmental Abnormalities of the Hippocampus: a report of five cases. Pediatr Dev Pathol. 2007;10:208-223
Krous H, Chadwick A, Miller D, Crandall L, Kinney H. Sudden Death in Toddlers with Viral Meningitis, Massive Cerebral Edema, and Neurogenic Pulmonary Edema and Hemorrhage: Report of Two Cases. Pediatr Dev Pathol. 2007;10:463-469
Crandall L, Devinsky O. Sudden Unexplained Death In Children. The Lancet Child and Adolescent Health, Vol 1, September 2017