Frequently Asked Questions

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Frequently Asked Questions

Sudden Unexplained Death in Childhood (SUDC) occurs in children beyond the age of twelve months. The cause of death remains unexplained after thorough case investigation including: examination of the child and family's medical history. SUDC is a diagnosis of exclusion, in other words, a diagnosis of SUDC is made when other causes of death are not identified after a thorough evaluation.

SUDC is not new, but is rare. Its incidence is about 1.4 deaths per 100,000 children. Based on 2014 statistics provided by the CDC Wonder Database, those affected by sudden unexplained death occurred in:

  • 202 children aged 1-4 years,
  • 25 children aged 5-9 years,
  • 29 children aged 10-14 years, and
  • 87 teens aged 15-19 years.

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 death 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.

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 channelopathies. 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.

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 uknown. Through research, we stive to discover the risk 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.

The family and caregivers of SUDC children are devastated by their loss and the sudden and unexpected nature in which it occurred. At one moment, a family has a happy and healthy child and soon after, without warning, the child is found dead. Even after a thorough investigation, medical professionals cannot explain to the family why their child did not wake up that particular day. This lack of understanding complicates their grief. Families are further burdened with the commonly held belief that once a child reaches their first birthday, that sudden and unexplained deaths cannot and do not occur. Limited awareness and understanding of SUDC exists among both the scientific and bereavement support communities. Families often grieve in isolation, without information, resources or knowing that other families exist with their similar loss. Until now, there has not been a centralized entity that has addressed the many issues specific to SUDC tragedies. Contact with other SUDC families can help. The newly bereaved can find understanding, hope, insight and objectivity through peer support of those who have had a similar loss.

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 comprehensiveness of the postmortem evaluation of a case of SUDC is also variable. For example, even though an autopsy is performed, important ancillary studies, such as metabolic analysis, may have been omitted. Additionally, genetic studies are often not performed. 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.