Related Experiment Video
Updated: Jun 16, 2026
Analysis of Congenital Heart Defects in Mouse Embryos Using Qualitative and Quantitative Histological Methods
Published on: March 10, 2020
20-year survival of children born with congenital anomalies: a population-based study
Peter W G Tennant1, Mark S Pearce, Mary Bythell
1Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK.
Insights
Congenital anomalies impact survival, with 20-year survival at 85.5% for affected individuals. Survival rates vary significantly by anomaly type, highlighting the need for tailored care strategies.
Area of Science:
- Medical research
- Pediatric health
- Public health
Background:
- Congenital anomalies are a major cause of infant mortality.
- Knowledge on long-term survival beyond the first year is limited for many anomaly types.
- This study addresses the knowledge gap by estimating survival up to 20 years of age.
Purpose of the Study:
- To estimate long-term survival rates for various congenital anomaly groups and subtypes.
- To identify factors influencing survival in individuals with congenital anomalies.
- To provide data for families and healthcare professionals for future care planning.
Main Methods:
- Utilized data from the UK Northern Congenital Abnormality Survey (NorCAS) from 1985-2003.
- Categorized anomalies by group, subtype, and syndrome using European Surveillance of Congenital Anomalies (EUROCAT) guidelines.
- Employed Kaplan-Meier methods for survival estimation and Cox proportional hazards regression for factor analysis.
Main Results:
- Overall 20-year survival was 85.5% for individuals with congenital anomalies.
- Survival rates varied significantly by anomaly type, ranging from 66.2% (nervous system) to 97.6% (orofacial clefts).
- The proportion of terminations for fetal anomaly increased over the study period, and year of birth was a significant predictor of survival.
Conclusions:
- Survival estimates for congenital anomaly groups and subtypes are crucial for informed decision-making.
- This data will aid families and healthcare professionals in understanding prognosis and planning care.
- Findings underscore the importance of ongoing research into congenital anomaly outcomes.
Background:
Congenital anomalies are a leading cause of perinatal and infant mortality. Advances in care have improved the prognosis for some congenital anomaly groups and subtypes, but there remains a paucity of knowledge about survival for many others, especially beyond the first year of life. We estimated survival up to 20 years of age for a range of congenital anomaly groups and subtypes.
Methods:
Information about children with at least one congenital anomaly, delivered between 1985 and 2003, was obtained from the UK Northern Congenital Abnormality Survey (NorCAS). Anomalies were categorised by group (the system affected), subtype (the individual disorder), and syndrome according to European Surveillance of Congenital Anomalies (EUROCAT) guidelines. Local hospital and national mortality records were used to identify the survival status of liveborn children. Survival up to 20 years of age was estimated by use of Kaplan-Meier methods. Cox proportional hazards regression was used to examine factors that affected survival.
Findings:
13,758 cases of congenital anomaly were notified to NorCAS between 1985 and 2003. Survival status was available for 10 850 (99.0%) of 10 964 livebirths. 20-year survival was 85.5% (95% CI 84.8-86.3) in individuals born with at least one congenital anomaly, 89.5% (88.4-90.6) for cardiovascular system anomalies, 79.1% (76.7-81.3) for chromosomal anomalies, 93.2% (91.6-94.5) for urinary system anomalies, 83.2% (79.8-86.0) for digestive system anomalies, 97.6% (95.9-98.6) for orofacial clefts, and 66.2% (61.5-70.5) for nervous system anomalies. Survival varied between subtypes within the same congenital anomaly group. The proportion of terminations for fetal anomaly increased throughout the study period (from 12.4%, 9.8-15.5, in 1985 to 18.3%, 15.6-21.2, in 2003; p<0.0001) and, together with year of birth, was an independent predictor of survival (adjusted hazard ratio [HR] for proportion of terminations 0.95, 95% CI 0.91-0.99, p=0.023; adjusted HR for year of birth 0.94, 0.92-0.96, p<0.0001).
Interpretation:
Estimates of survival for congenital anomaly groups and subtypes will be valuable for families and health professionals when a congenital anomaly is detected, and will assist in planning for the future care needs of affected individuals.
Funding:
BDF Newlife.
Related Concept Videos
01:07Teratogenicity
02:20Longitudinal Research
01:21Cancer Survival Analysis