Congenital Heart Disease Mortality Highest in Infants, Emphasizing Need for Specialized Care

Congenital heart disease (CHD) mortality is still at its highest in infancy, for both severe (sevCHD) and nonsevere (nsCHD), according to recent research from the Center for Disease Control’s STAR1 registry.1

Although CHD is the most frequent congenital disorder, affecting roughly 0.8% of live births, substantial technical improvements have resulted in a stark reduction of morbidity and mortality. However, as more patients are surviving CHD in infancy, more complications have emerged for this group in adulthood. Additionally, despite the growing number of these patients, US population-wide data on mortality rates (MR) are limited.1,2

Presented at the American Heart Association (AHA) Scientific Sessions 2025 in New Orleans, Louisiana, by Allison Levin, MD, Duke University, and colleagues, STAR1 is a US population-based study investigating CHD in patients ages 0-45 years from 7 states who had ≥1 health care encounter from 2010-2019. Age of death and underlying cause of death were obtained via state death certificates or birth defect registries.1

Included COD subgroups were CHD, heart failure (HF), cardiovascular disease including myocardial infarction and stroke (CAD), other acquired cardiovascular disease, and non-cardiac disease. MRs were calculated via deaths per 100,000 live births in infants and deaths per 100,000 person-years in non-infants.1

Levin and colleagues included 218,863 patients in the final total; of these, 21% had sevCHD. In both the sevCHD and nsCHD cohorts, 43% and 52% were infants at study entry, respectively. During the study period, 3.2% of patients died (n = 7175). Of these, 48% had sevCHD, and 7.6% with sevCHD died compared to 2.1% with nsCHD. A total of 11% of infants with sevCHD and 2% of infants with nsCHD died, which accounted for roughly 60% and 55% of all deaths in each severity group. Additionally, investigators noted lower MR consistent across the lifespan for nsCHD compared with sevCHD.1

Cause of death was obtained in 3 out of 7 states, accounting for 41% of nsCHD deaths and 40% of sevCHD deaths. In the sevCHD cohort, most causes of death were cardiac, mainly CHD in younger patients and a combination of CHD and all acquired cardiovascular disease with increasing age. By 41 years old, acquired cardiovascular disease and CHD accounted for roughly 40% of total MR.1

HF was the most common non-CHD cardiac cause of death, rising from 9 in 100,000 in 11-20 year olds to 197 in 100,000 in 41+ year olds (P <.05). CHD was a cause of death across all nsCHD ages, and non-cardiac disease was the most common underlying cause of death until 30 years old among those with nsCHD, versus all acquired cardiovascular disease in those >30 years.1

Ultimately, investigators spotlighted a higher mortality rate in infancy for both forms of CHD. SevCHD also had a uniformly higher MR than nsCHD. CHD and acquired cardiovascular disease were the cause of death in 80% of patients >40 years old.1

“[This highlights] the need for specialized CHD care and an emphasis on [cardiovascular] preventive care throughout the lives of CHD patients,” Levin and colleagues wrote.1

References

1. Levin A, Li J, Krasuski R, et al. Mortality Rates and Causes of Death in Patients with Congenital Heart Disease (CHD) Across the Lifespan: Population-Based Findings from the CDC-Funded STAR1 Study. Abstract presented at the American Heart Association Scientific Sessions 2025. New Orleans, Louisiana, November 8-10, 2025.

2. Bouma BJ, Mulder BJ. Changing Landscape of Congenital Heart Disease. Circ Res. 2017;120(6):908-922. doi:10.1161/CIRCRESAHA.116.309302