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Causes of Death in Infants and Children with Congenital Heart Disease

Jason L Williams1, Rachel D Torok1, Alfred D'Ottavio2

  • 1Department of Pediatrics, Division of Pediatric Cardiology, Duke University Medical Center, Box 3090, Durham, NC, 27710, USA.

Pediatric Cardiology
|April 23, 2021
PubMed

Insights

Congenital heart disease (CHD) is the leading cause of death in children, but lung and neurologic diseases are significant causes in infants and children with CHD. A multidisciplinary approach is needed to improve outcomes.

Area of Science:

  • Pediatric Cardiology
  • Public Health
  • Medical Outcomes Research

Background:

  • Improved surgical outcomes for congenital heart disease (CHD) mean infants and children may now die from other causes.
  • Understanding these causes of death (COD) is crucial for improving survival rates in this population.

Purpose of the Study:

  • To describe the causes of death (COD) in infants and children with congenital heart disease (CHD) in North Carolina (NC).
  • To compare COD across different CHD subtypes and age groups.

Main Methods:

  • Retrospective cohort study of patients aged 0-20 years with healthcare encounters in NC (2008-2013).
  • Linked patient records to NC death certificates (2008-2016).
  • Classified patients into CHD subtypes (severe, shunt, valve, other) and analyzed COD.

Main Results:

  • 35,542 patients evaluated; 15,277 infants had a mortality rate of 3.5/100 live births.
  • In infants (<1 year), leading COD were CHD (31.7%), lung disease (16.1%), and infection (11.4%).
  • In children (1-20 years), leading COD were CHD (34.2%), neurologic disease (10.2%), and infection (9.5%).
  • CHD was the primary COD in the severe subtype. Lung disease was the most common COD in infants with shunt-type CHD.
  • Infant mortality was three times higher than in children.

Conclusions:

  • Congenital heart disease remains the most common underlying cause of death, but extra-cardiac causes like lung and neurologic diseases are significant, especially in specific subtypes and age groups.
  • A multidisciplinary approach focusing on comorbid conditions is essential for improving outcomes in pediatric CHD patients.

Keywords:
AnomaliesCongenital heart diseaseDeath

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