Facts About Sudden Unexplained Death in Childhood

  • 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.
  • Most often, a seemingly healthy child goes to sleep and never wakes up.
  • At this time, we do not know what causes SUDC, how to predict it or how to prevent it.
  • 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.
  • See the National Organization for Rare Disorders' report on SUDC. 

Facts About the SUDC Foundation

The SUDC Foundation is a registered 501(c)(3). The SUDC Foundation is the only organization worldwide whose purpose is to promote awareness, advocate for research and support those affected by SUDC. The SUDC Foundation provides all services at no cost to the people it serves.

For additional information visit our Mission, Vision and Value web page.

How often does SUDC occur?

We do not know exactly how often SUDC occurs. Because the World Health Organization (WHO) lacks a specific way to record sudden and unexplained deaths in children that have been thoroughly investigated, it is impossible to know how widespread the problem is. Sudden Infant Death Syndome has its own code (R95), but it is not used for any deaths where the child is older than 364 days of age. The best thing we can do, at this time, is estimate deaths due to SUDC by examining the statistics of deaths with "undetermined" causes (R99). This information is displayed below. 

SIDS and Undetermined Child Death Crude Rates/100,000**, 2011-2017 in the US

 Year Under 1 yr Age 1-4 yrs Age 5-9 yrs Age 10-14 yrs Age 15-19 yrs
2011 69.7 1.5 .1 .1 .4
2012 69.6 1.4 .2 .1 .6
2013 66.4 1.4 .1 .1 .5
2014 66.8 1.3 .1 .1 .4
2015 69.6 1.4 .2 .2 .5
2016 69.3 1.5 .1 .2 .7
2017 67.3 1.5 .2 .2 .4 (15-18yo)

Statistics above are based on ICD-10 Codes R95-R99 from CDC Wonder Database

Centers for Disease Control and Prevention, National Center for Health Statistics. Multiple Cause of Death 1999-2017 on CDC WONDER Online Database, released December, 2018. Data are from the Multiple Cause of Death Files, 1999-2017, as compiled from data provided by the 57 vital statistics jurisdictions through the Vital Statistics Cooperative Program. Accessed at http://wonder.cdc.gov/mcd-icd10.html on Dec 8, 2018 12:13:06 PM

**Death rates for infants less than one year of age are calculated per 100,000 live births; death rates for children over the age of one are age adjusted per 100,000 children.

Based on the above statistics, 389 children were affected by sudden unexplained death in 2017, occurring in:

  • 243 children ages of 1-4 years,
  • 33 children ages of 5-9 years,
  • 39 children ages of 10-14 years,
  • and 74 teens ages of 15-18 years.

Undetermined Toddler Deaths: 5th Leading Category of Death in the U.S.

  • Leading Causes of Death Ages 1-4: U.S. 2017
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    Leading Causes of Death Ages 1-4: U.S. 2017
    CDC Vital Statistics 2017
  • 10 Leading Causes of Death by Age Group, U.S. 2017
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    10 Leading Causes of Death by Age Group, U.S. 2017
    10 Leading Causes of Death by Age Group, U.S. 2017

Frequently Asked Questions

What is SUDC?
Sudden Unexplained Death in Childhood (SUDC) is a category of death in children between the ages of 1 and 18 years that remains unexplained after a thorough investigation, including an autopsy.1. Most often, a seemingly healthy child goes to sleep and never wakes up 2,3.

What is the SUDC Foundation?
The SUDC Foundation is the only organization worldwide whose purpose is to promote awareness, advocate for research and support those affected SUDC. The SUDC Foundation provides all services at no cost to families.

Is SUDC something new?
SUDC is not new but is believed to be rare, with our most conservative estimates being about one in every 100,000 children. Every year, at least 400 children are lost to undetermined causes in the U.S. It is most common in young children and is the fifth leading category of death among children ages 1 to 4 years. 

In order to better understand how often SUDC truly occurs, we need population-based studies where we examine cases that reflect the gender and ethnic diversity of the general population. The Sudden Unexplained Death in Childhood Registry and Research Collaborative (SUDCRRC) of NYU Langone Health, which is supported in part from funding from the SUDC Foundation, has the largest database of SUDC victims to date. 

Why haven't I heard of SUDC before?
The term SUDC was first published in 2005. It had received very little focus from public health officials, has not received targeted public research funding and there have been no major awareness campaigns devoted to addressing it. Currently, awareness efforts are limited to the vital work of the SUDC Foundation and its community. Unfortunately, most people first learn of SUDC after a tragedy in their own child, their patient or someone they know. Raising awareness of SUDC is at the core of the work of the SUDC Foundation. 

What causes SUDC?
At this time, we do not know what causes SUDC. Sudden Unexplained Death in Childhood (SUDC) is a category of death, not a cause of death, in children between the ages of 1 and 18 that remains unexplained after a thorough investigation, including an autopsy. It is likely that SUDC does not have a single cause, but many causes, and is an umbrella term to describe these deaths that have not been specifically determined. 

Can SUDC be predicted or prevented?
No. At this time, we do not know what causes SUDC, how to predict it or how to prevent it. Through research, we strive to discover the risk factors and underlying causes of SUDC that will lead to its prevention. In the meantime, the SUDC Foundation recommends all families follow guidelines provided by the American Academy of Pediatrics in regards to attending regular child wellness visits, maintaining current vaccinations and seeking medical care when needed.

Is SUDC genetic?
Although rare, we know there are some genetic causes of sudden death that are not discovered by standard autopsy investigations. This is one of the many reasons that we advocate for comprehensive investigations, including genetic testing, for all sudden unexplained deaths, as well as screening of family members and DNA banking. Research will improve our understanding of the specific genetic variations that may contribute to some cases of sudden death that currently fall under SUDC. This could lead to the ability to screen at-risk children and help them receive appropriate medical care. 

What if a specific cause of death is identified for my child? Can the SUDC Foundation still help me?
The SUDC Foundation wants to help all families find accurate causes of death, and about 20% of our families do. The SUDC Foundation may be able to assist families with obtaining a second opinion of the child’s cause of death which may help with their grief and making future decision for their family. Regardless, the SUDC Foundation’s family services are available for all families grieving the sudden, unexpected death of a child (1-18 years). And all services are provided at no cost to the family.

Is SUDC like Sudden Infant Death Syndrome (SIDS) and/or Sudden Unexplained Infant Death (SUID)?
Terminology by acronym alone can be confusing dependent on location. Sudden Unexpected Infant Death (SUID), as used commonly by public health officials in the United States, refers to the combined rate of the three most frequent types of sudden unexpected deaths in infancy: sudden infant death syndrome (SIDS), accidental suffocation in a sleeping environment and other deaths from unknown causes.4

SUID may also be used by medical examiners and coroners as a final death certification: sudden un-explained infant death. SIDS is “the sudden, unexplained death of an infant younger than 1 year old,” (Eunice Kennedy Shriver National Institute of Child Health and Human Development).

In the United Kingdom, where the term “infant” can refer to children under 24 months, the defini-tion of SIDS differs by age, and describes it as the sudden, unexpected and unexplained death of an apparently healthy baby under 24 months of age [NHS, Department of Health and Social Care (DHSC).] 

SUDC is similar to SUID in that it: 

  • occurs in otherwise healthy children, 
  • most often during sleep, 
  • and has no known explanation. 

There may be other similarities, but research into SUDC is in its early stages and more is needed to better understand how similar or different the underlying causes are. The biggest difference we know is that a child’s death may be certified as SIDS or SUID in the U.S. if the child is less than 12 months of age. A child’s death may be certified as SUDC if he or she is over 1 year old, but under the age of 18. 

References:

  1. Krous  HF, Chadwick  AE, Crandall  L, Nadeau-Manning  JM.  Sudden unexpected death in childhood: a report of 50 cases.  Pediatr Dev Pathol. 2005;8(3):307-319
  2. Crandall LG, Lee JH, Stainman R, Friedman D, Devinsky O. Potential Role of Febrile Seizures and Other Risk Factors Associated With Sudden Deaths in Children. JAMA Netw Open. Published online April 26, 20192(4):e192739.
  3. McGarvey A, O’Regan M, Cryan J, et al. Sudden unexplained death in childhood (1-4 years) in Ireland: an epidemiological profile and comparison with SIDS. Arch Dis Child. 2012;97(8):692-697.
  4. Centers for Disease Control and Prevention; Division of Reproductive Health, National Center for Chronic Disease Prevention and Health Promotion, https://www.cdc.gov/sids/ResourceLinks.htm, 2018.