Infant Mortality due to Congenital Diaphragmatic Hernia, United States 2007–2021

Objective To analyze temporal trends and geographic variations in infant mortality rate associated with congenital diaphragmatic hernia (CDH‐IMR) in the United States. Methods From 2007 to 2021, we used CDC‐WONDER linked birth/death data to identify CDH‐related infant deaths (ICD‐10 code: Q79 as the underlying cause of death), analyze annual CDH‐IMR trends, and explore associations with sex, gender, gestational age (GA), and U.S. state of birth. Descriptive statistics were derived, and bivariate analyses were conducted to discern differences in CDH‐IMR by gender, race, and GA. CDH‐IMR was expressed per 100,000 live births with Poisson‐modeled 95% confidence intervals, and trends were assessed through joinpoint regression to extrapolate annual percent change (APC). Results Between 2007 and 2021, 59,117,761 live births and 3391 CDH‐related infant deaths were recorded. CDH infant deaths accounted for 0.96% of all infant deaths and occurred in 0.006% of live births. The mean CDH‐IMR was 5.7 (95% CI: 5.5–5.9) per 100,000 live births, with a significant downward trend (APC: −1.3%, [95% CI: −2.0, −0.5, p < 0.01]). Asian infants had a lower risk of mortality (RR 0.66 [95% CI: 0.55, 0.79]) compared to White infants, and higher GA at birth correlated with better survival. Regional analysis revealed a median CDH‐IMR (IQR) of 5.9 (4.7, 7.2), with a three‐fold variation across U.S. states. Conclusion In this national population‐based U.S. study, we observed a decreasing trend in CDH‐IMR. However, significant variation in CDH mortality persists by region, gender, and race. Despite evidence of current CDH care is associated with a decreasing trend in mortality, there remain many opportunities for equitable improvement in outcomes across race, gender and by geographic region.