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Published on: July 18, 2014
Sudden unexpected death in children with congenital heart defects
Jarle Jortveit1, Leif Eskedal2, Asle Hirth3
1Department of Cardiology, Sørlandet Hospital, PO Box 783, Stoa, 4809 Arendal, Norway Institute of Clinical Medicine, University of Oslo, Oslo, Norway jarle.jortveit@sshf.no.
Insights
Sudden unexpected death is rare in children with congenital heart defects (CHDs) aged 2-18. Most deaths were linked to comorbidity, not physical activity, indicating safety for sports participation in this group.
Area of Science:
- Pediatrics
- Cardiology
- Public Health
Background:
- Congenital heart defects (CHDs) are the most common birth defects and a leading cause of childhood mortality.
- Fear of sudden unexpected death often leads to activity restrictions for children with CHDs.
Purpose of the Study:
- To determine the incidence of sudden unexpected death unrelated to surgery in children (2-18 years) with CHDs.
- To identify if these deaths were associated with cardiac disease, comorbidities, or physical activity.
Main Methods:
- Utilized Norwegian registries (Medical Birth Registry, Cardiovascular Disease in Norway, Oslo University Hospital CHD Registry, Cause of Death Registry) for data from 1994-2009.
- Followed survivors through 2012 and retrieved medical records for deceased children.
Main Results:
- Identified 19 (0.2%) sudden unexpected deaths among 11,272 children with CHDs (aged 2-18).
- Cardiac causes were identified in 7 deaths; comorbidity was frequent.
- No deaths occurred during physical activity; two children experienced cardiac arrest during sports.
Conclusions:
- Sudden unexpected death is infrequent in children with CHDs surviving past age two.
- Comorbidity is a significant factor in these deaths.
- Physical activity is rarely the cause of sudden unexpected death in this population.
Aims:
Congenital heart defects (CHDs) are the most common birth defects and are an important cause of death in children. The fear of sudden unexpected death has led to restrictions of physical activity and competitive sports. The aim of the present study was to investigate the rate of sudden unexpected deaths unrelated to surgery in children 2-18 years old with CHDs and, secondarily, to determine whether these deaths were related to cardiac disease, comorbidity, or physical activity.
Methods And Results:
To identify children with CHDs and to determine the number of deaths, data concerning all 9 43 871 live births in Norway in 1994-2009 were retrieved from the Medical Birth Registry of Norway, the Cardiovascular Disease in Norway project, the Oslo University Hospital's Clinical Registry for Congenital Heart Defects and the Norwegian Cause of Death Registry. Survivors were followed through 2012, and information for the deceased children was retrieved from medical records at Norwegian hospitals. Among 11 272 children with CHDs, we identified 19 (0.2%) children 2-18 years old who experienced sudden unexpected deaths unrelated to cardiac surgery. A cardiac cause of death was identified in seven of these cases. None of the children died during physical activity, whereas two children survived cardiac arrest during sports.
Conclusion:
Sudden unexpected death was infrequent among children with CHDs who survived 2 years of age. Comorbidity was common among the children who died. This study indicates that sudden unexpected death in children with CHDs rarely occurs during physical activity.
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