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Regional Variations in Mortality, Surgical Treatment, and Hospitalization in Children With Congenital Diaphragmatic
Mads Damkjær1,2, Frederik Høst Meldgaard1,2, Joachim Tan3,4
1Department of Paediatrics and Adolescent Medicine, Lillebaelt Hospital, University Hospital of Southern Denmark, Kolding, Denmark.
Insights
Congenital diaphragmatic hernia (CDH) mortality is highest in newborns, stabilizing after infancy. Population data reveal regional variations in surgical timing and survival for children with CDH.
Area of Science:
- Pediatric Surgery
- Congenital Anomalies
- Public Health Epidemiology
Background:
- Congenital diaphragmatic hernia (CDH) is a serious birth defect impacting infant survival and requiring complex management.
- Understanding population-level outcomes is crucial for improving care and resource allocation for children with CDH.
Purpose of the Study:
- To analyze mortality, surgical interventions, and hospitalization patterns in children with CDH using European population-based data.
- To identify variations in care and outcomes across different European regions.
Main Methods:
- A cohort study utilizing data from nine EUROCAT registries across five European countries (2005-2014).
- Inclusion of live-born infants with CDH, with follow-up until age 5 (hospital data) or age 10 (mortality data).
- Meta-analysis of standardized data to estimate pooled outcomes for all CDH cases and isolated CDH.
Main Results:
- First-year survival for isolated CDH was 74.5%, with significant regional variations (63%-83%).
- Most CDH-related deaths occurred within the first week of life; no deaths were recorded after age 5.
- Median age at surgery was ~2 weeks, with considerable regional differences in surgical timing and infant hospital length of stay (14-29 days).
Conclusions:
- Mortality for congenital diaphragmatic hernia (CDH) is concentrated in the neonatal period, with survival rates stabilizing post-infancy.
- The absence of deaths after age 5 suggests long-term survival is achievable for most CDH survivors.
- Observed regional disparities in mortality and surgical management underscore the importance of harmonized, population-based data for benchmarking and improving care standards.
Purpose:
To describe mortality, surgical treatment, and hospitalization patterns in children with congenital diaphragmatic hernia (CDH) using population-based data, linked to congenital anomaly registries across Europe.
Methods:
This cohort study used nine EUROCAT registries in five countries (Denmark, Finland, Italy, Spain, and the United Kingdom) linked to routinely collected hospital and mortality data. Children born alive with CDH between 2005 and 2014 were included and followed until age 5 in hospital data or age 10 in death data, with the final follow-up the end of 2015. Analyses were conducted for all CDH cases and separately for isolated CDH (CDH without additional major congenital anomalies). Standardized data processing and meta-analysis methods were used to generate pooled estimates of mortality, surgical interventions, and hospital stays.
Results:
Among 567 children with CDH, most were isolated CDH. First year survival was 74.5% for isolated CDH, ranging from 63% to 83% between registries. Similar survival was noted for all children with CDH. Most deaths occurred within the first week. Mortality rates plateaued after infancy, with no deaths recorded after age 5. The median age at surgery was approximately 2 weeks, although this varied by region. Median hospital length of stay in infancy varied from 14 to 29 days between regions.
Conclusion:
In children with CDH, mortality is highest in the neonatal period, with long-term survival stabilizing after infancy. No deaths occurred after age 5 years. Regional differences in mortality and surgical timing highlight the value of population-based, harmonized data for benchmarking and international comparisons.