CHD Survival Improves Over Three Decades as TOPFA Rates Decline
Survival Rates and Pregnancy Terminations in Congenital Heart Defects
One-year survival for infants born with congenital heart defects reached 91.0% across a 30-year study period, according to data from the Paris Registry of Congenital Anomalies published by Elsevier in a conference abstract by Neil Derridj and colleagues. The Paris Registry tracked 5,898 congenital heart defect cases between 1994 and 2024, recording 4,391 live births, 1,361 terminations of pregnancy for fetal anomaly, and 146 stillbirths. The primary finding contrasts overall survival milestones against distinct subgroup trajectories, showing that isolated defects climbed to 95.0% survival while severe isolated defects reached 84.0%.
- One-year survival for infants with congenital heart defects reached 91.0% overall, climbing to 95.0% for isolated defects over the 30-year study window.
- Annual survival gains slowed over time, dropping from approximately +0.5% per year early in the study period to +0.2% in recent years.
- Terminations of pregnancy for fetal anomaly declined among prenatally diagnosed isolated and severe isolated congenital heart defects while survival rates continued to rise.
Survival Gains Slowed Down Significantly After 2009
Overall survival improved significantly over the three decades analyzed, though the pace of improvement decelerated. The data revealed a non-linear pattern with a distinct change in slope around 2007 to 2009. The absolute annual gain in survival dropped from approximately +0.5% at the beginning of the study period down to +0.2% in recent years. Similar trajectory shifts appeared in isolated congenital heart defects, which experienced smaller annual gains after approximately 2009.
Severe isolated congenital heart defects maintained an annual survival gain of +0.56% per year. Concurrently, among pregnancies with a recorded prenatal diagnosis, terminations of pregnancy for fetal anomaly decreased by 0.50% per year in isolated congenital heart defects and by 0.36% per year in severe isolated defects. These diverging trends challenge the assumption that prenatal selection through termination serves as the primary driver behind recent survival patterns.
Subgroup Divergence Between Isolated and Non-Isolated Defects
The Elsevier conference abstract reports that among 5,674 cases, 66.1% were isolated and 33.9% were non-isolated. One-year survival reached 95.0% in isolated congenital heart defects but stood significantly lower at 76.3% in non-isolated defects. The researchers note that while survival improved in isolated defects despite a decline in termination rates, both survival and termination rates remained stable over time in non-isolated congenital heart defects.
| Congenital Heart Defect Subgroup | One-Year Survival Rate | Termination Rate Trend |
|---|---|---|
| Isolated CHD | 95.0% | Declined by 0.50% annually among prenatally diagnosed pregnancies |
| Severe Isolated CHD | 84.0% | Declined by 0.36% annually among prenatally diagnosed pregnancies |
| Non-Isolated CHD | 76.3% | Remained stable over time |
The divergence between isolated and non-isolated defects shows that survival improved over time but was confined to isolated defects, with no meaningful progress in non-isolated congenital heart defects.
Unresolved Questions in Long-Term Pediatric Outcomes
Divergent trends between survival and termination of pregnancy for fetal anomaly challenge the notion of a plateau and argue against prenatal selection as the primary driver of recent survival patterns.
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