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Infants with critical heart disease in a territory with centralized care
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Critical heart disease affects approximately 2.36 per 1,000 live births. This study analyzes the incidence and types of critical congenital heart disease in infants, with common conditions including ventricular septal defect and complete transposition.
Area of Science:
- Pediatric Cardiology
- Congenital Heart Disease Epidemiology
Background:
- Critical congenital heart disease (CCHD) poses a significant health challenge in infancy.
- Centralized care models are crucial for managing complex pediatric cardiovascular conditions.
Purpose of the Study:
- To determine the incidence and spectrum of CCHD in a defined population.
- To analyze the demographic and clinical characteristics of infants with CCHD.
- To evaluate trends in specific CCHD diagnoses over a five-year period.
Main Methods:
- Retrospective analysis of all infants diagnosed with CCHD within a 6.3 million population territory.
- Inclusion of autopsy data for deceased infants to confirm diagnoses.
- Centralized data collection at a single pediatric cardiology center.
Main Results:
- The overall incidence of CCHD was 2.36 per 1,000 live births, fluctuating between 2.15 and 2.51.
- The most frequent CCHDs were ventricular septal defect (18.2%), complete transposition (14.6%), and coarctation of the aorta (10.0%).
- Over 50% of affected infants became critically ill or died during the neonatal period, with complete transposition and hypoplastic left heart syndrome being prominent in this group.
Conclusions:
- CCHD represents a substantial burden, with a consistent incidence over five years.
- Specific CCHD types showed changing frequencies, highlighting the need for ongoing surveillance.
- Early diagnosis and intervention are critical, as a majority of infants with CCHD face severe illness or death in the neonatal period.
Abstract:
All children with a critical heart disease in a 6.3 million inhabitants territory were referred and all infants who died were autopsied and the protocols sent to the only Center of Pediatric Cardiology and Cardiovascular Surgery. In the first 5 years of the centralized care, 1,122 infants, i.e. 2.36/1,000 live births suffered from a critical heart disease. 639 (57%) were admitted to the Center and the rest died in provincial hospitals with but not always from a heart disease found at autopsy. An additional 43 (6.2%) patients had nonstructural heart disease and 12 (1.7%) had heart diseases not considered to be critical. The total incidence of critical heart disease fluctuated from 2.15 to 2.51/1,000 live births without any well-defined trend. A decrease in the relative frequency throughout the 5-year period was found for common arterial trunk, pulmonary stenosis and atresia while an increase was observed in patency of the arterial duct. The most frequent critical heart diseases in infancy were: ventricular septal defect (18.2%) - mostly in isolation; complete transposition (14.6%); aortic coarctation (10.0%); hypoplastic left heart syndrome (9.1%) and pulmonary atresia (6.3%). The majority (51.4%) of patients became critically ill or died in the neonatal period. The most common conditions seen in neonates were complete transposition (22.5%), hypoplastic left heart syndrome (16.1%) and coarctation of the aorta (9.5%). The highest share of critically ill patients was encountered in complete transposition (100%), pulmonary atresia (98.7%), common arterial trunk (97.4%) and double outlet right ventricle (92.1%). The least dangerous were atrial septal defect (6.6%), pulmonary stenosis (7.0%), aortic stenosis (12.2%) and ventricular septal defect (21.0%). The mean age was 76 (+/- 56) days at admission and 59 (+/- 73) days at death. Urgent cardiovascular surgery was performed in 235 (36.8%) of the 639 patients admitted in infancy, that is 0.5 per 1,000 live born children.