Over three decades, one-year survival for infants with congenital heart defects (CHD) reached 95% for isolated cases and 84% for severe isolated cases, even as pregnancy terminations for these diagnoses declined, a Parisian study reveals. This progress challenges the notion of a survival plateau and argues against prenatal selection as the primary driver of the gains.
The study directly contradicts the prevailing hypothesis that recent survival gains are merely due to the termination of more severe cases prenatally.
Survival for Heart Defects Has Improved
- Survival for babies with congenital heart defects has improved over three decades, reaching 95% for isolated cases.
The Paris Registry Reveals a Decade of Steady, Slowing Gains
The Paris Registry of Congenital Anomalies, tracking 5,898 cases from 1994 to 2024, provides a long-term, population-based look at CHD outcomes. The data shows a clear, non-linear pattern of improvement. Early in the study period, survival rates rose by approximately 0.5% annually. However, after a major change from 2007 to 2009, that annual gain slowed to about 0.2%. This deceleration is a key finding, indicating that while progress continues, it is becoming incrementally more difficult to achieve.
This pattern of "slowing but continuing improvement" was observed across different subgroups. For isolated CHD—defects without other genetic or extracardiac anomalies—survival climbed to 95%. Even for severe isolated CHD, a category with historically grim outlooks, survival improved significantly at a rate of +0.56% per year. This directly counters the narrative of a clinical plateau.
Terminations Decreased While Survival Rose
A central question in CHD research has been whether improved survival statistics are a true medical breakthrough or merely an artifact of selective pregnancy termination. The Paris data offers a definitive answer. Among pregnancies where CHD was prenatally diagnosed, the rate of TOPFA (Termination of Pregnancy for Fetal Anomaly) decreased for both isolated and severe isolated CHD. Specifically, TOPFA for isolated CHD fell by -0.50% per year, and for severe isolated CHD by -0.36%.
This decline in terminations occurred alongside a rise in survival. Elsevier reported that this improvement “was driven by isolated CHD, in which survival increased despite a decline in TOPFA.” The data creates a powerful contrast: as survival increased, fewer terminations were recorded among prenatally diagnosed pregnancies, reinforcing the idea of genuine progress.
What the Findings Mean for Prenatal Counseling
The implications of this population-based research extend far beyond Paris.
| CHD Category | One-Year Survival Rate (Overall) | Annual Survival Trend (2009-Present) | Annual TOPFA Trend (Prenatal Diagnoses) |
|---|---|---|---|
| All CHD | 91.0% | +0.2% | — |
| Isolated CHD | 95.0% | +0.2% (small gains) | -0.50% per year |
| Severe Isolated CHD | 84.0% | +0.56% per year | -0.36% per year |
| Non-Isolated CHD | 76.3% | Stable | Stable |
The Research Team
The study was conducted by a team of researchers including Neil Derridj, Isabelle Monier, Marine Wojciechowski, Damien Bonnet, Francois Goffinet, Nathalie Lelong and Babak Khoshnood. The work was published as a conference abstract by Elsevier, and the underlying data come from the Paris Registry of Congenital Anomalies, a population-based registry.
Study Findings Highlight Expert Care Importance
This research is an epidemiological study, not a clinical guideline for individual treatment. It does not provide medical advice for specific patients. However, its findings show the importance of expert medical care.
The Unanswered Question: A Persistent Gap for Complex Cases
While the news is overwhelmingly positive, the study highlights a critical area of stagnation. Survival for non-isolated CHD—cases where the heart defect is accompanied by other genetic syndromes or major organ anomalies—has not improved. The survival rate for this group remained flat at 76.3%, and the TOPFA rate did not change over time. Elsevier’s coverage starkly notes: “in non-isolated CHD, both survival and TOPFA rates remained stable over time.” This divergence between isolated and non-isolated defects points to a complex biological reality.
“Survival of infants with CHD improved over time but was confined to isolated defects, with no meaningful progress in non-isolated CHD. Divergent trends between survival and TOPFA challenge the notion of a plateau and argue against prenatal selection as the primary driver of recent survival patterns.”
Neil Derridj and colleagues, authors of the study
References
- Elsevier. (2026). Conference abstract: long-term trends in one-year survival and TOPFA in congenital heart defects, Paris Registry of Congenital Anomalies (1994–2023).
- Paris Registry of Congenital Anomalies study data (1994–2024), as reported in the study abstract.
