Sudden unexpected death in children with congenital heart defects.
OBJECTIVE
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.


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.


CONCLUSIONS
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.
Department of Cardiology, Sørlandet Hospital, PO Box 783, Stoa, 4809 Arendal, Norway Institute of Clinical Medicine, University of Oslo, Oslo, Norway jarle.jortveit@sshf.no.
Jarle
J
Jortveit
Research Department, Sørlandet Hospital, Kristiansand, Norway.
Leif
L
Eskedal
Department of Pediatrics, Haukeland University Hospital, Bergen, Norway.
Asle
A
Hirth
Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway.
Tatiana
T
Fomina
Women's and Children's Department, Oslo University Hospital, Oslo, Norway.
Gaute
G
Døhlen
Women's and Children's Department, Oslo University Hospital, Oslo, Norway.
Petter
P
Hagemo
Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway Division of Epidemiology, Norwegian Institute of Public Health, Bergen, Norway.
Grethe S
GS
Tell
Department of Cardiothoracic Surgery, Oslo University Hospital, Oslo, Norway.
Sigurd
S
Birkeland
Department of Global Public Health and Primary Care, University of Bergen, Bergen, Norway Center for Medical Genetics and Molecular Medicine, Haukeland University Hospital, Bergen, Norway.
Nina
N
Øyen
Institute of Clinical Medicine, University of Oslo, Oslo, Norway Women's and Children's Department, Oslo University Hospital, Oslo, Norway.
Henrik
H
Holmstrøm
D006348:Cardiac Surgical Procedures; D002423:Cause of Death; D002648:Child; D003645:Death, Sudden; D006330:Heart Defects, Congenital; D006801:Humans; D012042:Registries
Cardiology; Congenital heart defect; Mortality; Sport; Sudden unexpected death