Congenital heart disease in England: a national cohort study from fetal diagnosis to end of infancy
Authors' conclusion
This national, linked cohort shows that un-intervened cases account for most infant deaths and that antenatal detection exceeds 90% for the most complex lesions. Registries and quality improvement should include all CHD care pathways to inform counselling and equitable service planning.
Study context
- Population
- All detected structural congenital heart disease (CHD) cases in England from fetal life to the age of 1 year, estimated delivery/birth dates 2018–2020
- Participants
- 11,265 CHD cases
- Exposure
- Live birth with no cardiac intervention in infancy vs live birth with intervention(s) in infancy
- Live birth with no cardiac intervention in infancyn = 4,538
- Live birth with intervention(s) in infancyn = 4,666
- Outcome
- Antenatal detection
Methodological detailslinked, incident cohort
- Linked
- Incident cohort
Main finding
As reported in the abstract
All CHD cases antenatally detected
63.7%
95% CI 62.8% to 64.6%
Hypoplastic left heart syndrome (HLHS) antenatally detected
94.2%
92.0% to 96.0%
Observational data: associations, not effects.
Further findings
Infant mortality · age of 1 year · categories overlap (and/or)
- Infant mortality — Of the 602 deaths without intervention: critical CHD
- n=154
- Infant mortality — Of the 602 deaths without intervention: preterm birth
- n=301
- Infant mortality — Of the 602 deaths without intervention: comorbidity
- n=362
Pregnancy outcomes
- Terminations
- 1766 (15.7%, 95% CI 14.7% to 16.7%)
- Fetal losses
- 295 (2.6%, 95% CI 1.6% to 3.6%)
- Live births with no infant cardiac intervention
- 4538 (40.3%, 95% CI 39.3% to 41.3%)
- Live births with intervention(s)
- 4666 (41.4%, 95% CI 40.4% to 42.4%)
Termination by CHD complexity, comorbidity and deprivation
- HLHS
- 51.1% (95% CI 46.8% to 55.5%)
- Isolated ventricular septal defect
- 6.0% (95% CI 4.3% to 7.7%)
- Non-cardiac comorbidities
- 23.6% (95% CI 21.9% to 25.4%)
- No non-cardiac comorbidities
- 11.3% (95% CI 10.1% to 12.6%)
- Least deprived areas
- 20.3% (95% CI 17.5% to 23.1%)
- Most deprived areas
- 11.6% (95% CI 9.7% to 13.5%)
- HLHS vs isolated VSD p<0.001
- Comorbidities p<0.001
- Least vs most deprived p<0.001
Original publication
Congenital heart disease in England: a national cohort study from fetal diagnosis to end of infancy. Heart. Published 21 October 2025. doi:10.
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