What is SUDC?
Sudden Unexplained Death in Childhood (SUDC) is the sudden and unexpected death of a child over the age of 12 months, which remains unexplained after a thorough case investigation is conducted. This must include: examination of the death scene, performance of a complete autopsy, and a review of the child and family’s medical history. SUDC is a diagnosis of exclusion – given when all known and possible causes of death have been ruled out.
How often does SUDC occur?
According to the Center for Disease Control (CDC) 2013 statistics, those affected by sudden unexplained death occurred in:
▪ 223 children ages of 1-4 years,
▪ 28 children ages of 5-9 years,
▪ 29 children ages of 10-14 years, and
▪ 107 teens ages of 15-19 years
The incidence of SUDC in toddlers is about 1.4 per 100,000 children.*
* based on codes R96-99 from CDC Wonder Database (2013)
The Sudden Unexplained Death in Childhood (SUDC) Foundation is tasked with providing a centralized resource for information, support and advocacy. It serves families and professionals affected by the tragedy of SUDC, and promotes awareness of SUDC in communities.
Grief Services for Bereaved Families
The SUDC Foundation provides support for those who have lost a child to an unexpected death. The families can register their information through sudc.org and will receive access to a spectrum of available grief services, including accurate information regarding SUDC and medical information, access to private online email groups specific to bereaved family members, Peer Support Program and opportunities to enroll and participate in SUDC related research initiatives.
Research into SUDC
Visit The SUDC Foundation’s website to learn more about current research into uncovering the mystery of Sudden Unexplained Death in Childhood.
SUDC Data Enhancement & Awareness Act
The Sudden Unexpected Death Data Enhancement and Awareness Act (H.R. 669) was passed unanimously in the Senate and the U.S. House of Representatives and signed into law by Pres-ident Obama on December 18, 2014. The Act will build upon existing activities at the Center for Disease Control and Prevention (CDC) to improve the quality and consistency of data collected during the death scene investigations and autopsies. The objective is to better inform prevention and intervention efforts related to stillbirths, Sudden Unexpected Infant Deaths (SUID) and SUDC.
By definition, the cause of death in these children is unknown. SUDC is a category of deaths that can be determined only after a thorough review of the medical history of the child and their family, evaluation of the scene where the child was discovered, and the postmortem examination. SUDC (or undetermined) is sometimes utilized when an accurate cause of death cannot be found after a thorough investigation.
The SUDC Foundation wants to help all families find accurate causes of death, and about 20% of our families do. Support services are available for anyone grieving the loss of a sudden, unexpected death of a child.
No. At the present time, there is not enough known about the underlying mechanisms of death in SUDC to allow prediction of which children might die suddenly and unexpectedly. Additionally, there is no way to prevent SUDC since its cause is unknown. Through research, we strive to discover the risks factors and underlying causes of SUDC that will lead to its prevention. In the meantime, optimal pediatric care recommendations, including attending well child visits, maintaining current vaccinations, and obtaining appropriate health care when clinically indicated, should be followed.
At this time, we do not know the answer to this question. We do know that some rare causes of sudden death are associated with a genetic predisposition–like some cardiac channnelopathies. This is one of the many reasons that we advocate for comprehensive investigations for all sudden unexpected deaths and the screening of family members. As our overall understanding of genetics improves, we hope to determine if there are genetic variations in some children of SUDC that may predispose them to a vulnerability that was previously unknown. This type of discovery could lead to the screening of at-risk children and their appropriate medical care.
Death investigations vary widely throughout the United States and abroad. Virtually all states in the United States mandate autopsy examination in cases of sudden death in infancy. Although cases of SUDC would legally fall under the jurisdiction of the medical examiner or coroner, autopsy examination may not be performed in some jurisdictions. This is especially true if the attending physician is willing to sign a death certificate. The postmortem evaluation of a case of SUDC may not be as comprehensive or systematic as in cases of sudden unexplained death in infancy. For example, even though an autopsy is performed, important ancillary studies, such as metabolic analysis, may have been omitted.
Standardized protocols for both death scene investigation and postmortem examination in sudden unexplained infant death that have been endorsed by the National Association of Medical Examiners (NAME) and the Society for Pediatric Pathology. However, there are no mandated protocols for cases of sudden death after the first birthday. The existent protocols for infants could serve as an important, but imperfect diagnostic aid for children over one.
Information provided by The SUDC Foundation.