Related Experiment Video
Updated: Mar 13, 2026
Caudal-to-cranial Approach in Laparoscopic Right Hemicolectomy with Complete Mesocolon Excision and D3 Lymph Node Dissection
Published on: January 9, 2026
Addressing the hidden mortality in CDH: A population-based study
Carmen Mesas Burgos1, Björn Frenckner1
1Department of Pediatric Surgery, Karolinska Institutet, Stockholm, Sweden.
Insights
Congenital diaphragmatic hernia (CDH) incidence in Sweden remained stable, but a significant hidden mortality rate of 45% exists. This highlights the need for improved detection and management strategies for CDH cases.
Area of Science:
- Pediatric Surgery
- Neonatal Medicine
- Public Health Epidemiology
Background:
- Clinical management of congenital diaphragmatic hernia (CDH) has improved outcomes in single institutions.
- Population-based studies reveal a concerning 'hidden mortality' associated with CDH.
- Understanding the true burden of CDH requires a population-level perspective.
Purpose of the Study:
- To determine the incidence of CDH in Sweden over a 27-year period.
- To investigate and quantify the hidden mortality associated with CDH in a population-based setting.
- To analyze trends in CDH prevalence and mortality over time.
Main Methods:
- Population-based cohort study utilizing national registers (Patient Register, Medical Birth Register, Register of Congenital Malformations, Register for Causes of Death) from 1987-2013.
- Calculation of incidence rates based on live births and registered CDH cases.
- Definition and quantification of hidden mortality, including terminations of pregnancy (TOP), intrauterine fetal deaths (IUFD), and early neonatal deaths outside tertiary centers.
Main Results:
- A total of 861 CDH cases were born, yielding an incidence of 3.0 per 10,000 live births.
- Including TOP and IUFD, the total CDH incidence was 3.5 per 10,000 live births.
- Overall mortality rate was 36%, with a significant decrease from 44% (1987-1999) to 27% (2000-2013). Hidden mortality in the later period was 30%, leading to a total mortality of 45%.
Conclusions:
- The incidence of CDH in the Swedish population has remained unchanged over 27 years.
- An increasing number of terminations of pregnancy (TOP) have led to a decrease in the prevalence of live-born CDH.
- A substantial hidden mortality exists, contributing to an overall CDH mortality rate of 45% in this population.
Background:
Improvements in the clinical management of CDH have led to overall improved reported result from single institutions. However, population-based studies have highlighted a hidden mortality.
Aim:
To explore the incidence in Sweden and to address the hidden mortality for CDH during a 27-year period in a population-based setting.
Materials And Methods:
This is a population based cohort study that includes all patients diagnosed with CDH that were registered in the National Patient Register, the Medical Birth Register, the Register of Congenital Malformations and the Register for Causes of Death between 1987 and 2013. The mortality rates were calculated based on the number deaths divided by the number of live born cases. The hidden mortality was defined as the number of CDH cases that were not born (because of TOP or IUFD), cases of neonatal demise during birth or demise the same day of birth in patients who were in peripheral institutions and who never reached tertiary centers.
Results:
In total, 861 CDH patients were born in Sweden between 1987 and 2013, which corresponds to an incidence of 3.0 born CDH per 10,000 live births. When adding the cases of TOP and IUFD, the total incidence of CDH in Sweden was 3.5/10,000 live born. The mortality rate between 1987 and 2013 was 36%: 44% during the first time period 1987-1999 and 27% in the later period 2000-2013. The hidden mortality in the second period was 30%, resulting in a total mortality rate of 45%.
Conclusion:
The incidence of CDH during a 27-year period remained unchanged in the population. However, we observed a decrease in the prevalence because of the increasing numbers of TOP. A significant hidden mortality exists, with overall mortality rate of 45% for CDH in this population.
Level Of Evidence:
II (cohort).
Related Concept Videos
01:26Diseases of the Liver and Gallbladder
Cirrhosis is characterized by the scarring of hepatic lobules in the liver, which are replaced by fibrous tissue, affecting the liver's normal functioning. NAFLD, on the other hand, is caused by an excessive build-up of fat in the liver, not...
01:17Chronic Bowel Disorders: Introduction
Irritable Bowel Syndrome (IBS) is a common disorder affecting the gastrointestinal tract. The distinctive feature is recurrent abdominal pain associated with altered bowel movements, manifesting as constipation, diarrhea, or fluctuating between both. The...