Congenital Heart Defects in Europe

Abstract

Background— This study determines the prevalence of Congenital Heart Defects (CHD), diagnosed prenatally or in infancy, and fetal and perinatal mortality associated with CHD in Europe. Methods and Results— Data were extracted from the European Surveillance of Congenital Anomalies central database for 29 population-based congenital anomaly registries in 16 European countries covering 3.3 million births during the period 2000 to 2005. CHD cases (n=26 598) comprised live births, fetal deaths from 20 weeks gestation, and terminations of pregnancy for fetal anomaly (TOPFA). The average total prevalence of CHD was 8.0 per 1000 births, and live birth prevalence was 7.2 per 1000 births, varying between countries. The total prevalence of nonchromosomal CHD was 7.0 per 1000 births, of which 3.6% were perinatal deaths, 20% prenatally diagnosed, and 5.6% TOPFA. Severe nonchromosomal CHD (ie, excluding ventricular septal defects, atrial septal defects, and pulmonary valve stenosis) occurred in 2.0 per 1000 births, of which 8.1% were perinatal deaths, 40% were prenatally diagnosed, and 14% were TOPFA (TOPFA range between countries 0% to 32%). Live-born CHD associated with Down syndrome occurred in 0.5 per 1000 births, with >4-fold variation between countries. Conclusion— Annually in the European Union, we estimate 36 000 children are live born with CHD and 3000 who are diagnosed with CHD die as a TOFPA, late fetal death, or early neonatal death. Investing in primary prevention and pathogenetic research is essential to reduce this burden, as well as continuing to improve cardiac services from in utero to adulthood.

Prenatal detection of congenital heart disease—results of a national screening programme

“…24 The total birth prevalence that was found in this study is consistent with a worldwide accepted birth prevalence of severe CHD. 2,7,10,25 Pathology databases, sudden infant death records and emergency ward admissions were studied for potential cases and we assume that we did not miss a significant number of them. The lost-to-follow-up rate in our cohort is very low.…”

Almanac 2012: Congenital heart disease. The national society journals present selected research that has driven recent advances in clinical cardiology

“…Data from a central database for 29 population-based registries in 16 countries showed a total prevalence of 8 per 1000. 1 The overall detection rate of non-chromosomal congenital heart disease prenatally was only 20%, although 40% of severe cases were diagnosed before birth. It was estimated that each year in the European Union 36,000 children are live-born with congenital heart disease and another 3000 are diagnosed with congenital heart disease but die as a termination of pregnancy for foetal abnormality.…”

Effect of Fetal Growth on 1‐Year Mortality in Neonates With Critical Congenital Heart Disease

“…Congenital heart disease (CHD) is the most common category of birth defect, with an incidence rate between 0.3% and 0.8% 1, 2. Critical CHD (CCHD)—defined as requiring neonatal intervention—is reported to have an incidence rate of 0.17% 3.…”