Abstract

Infants with congenital heart defects (CHD) have increased risk of childhood mortality; previous research indicates racial/ethnic differences in timing of death during infancy. However, less is known about racial/ethnic disparities in timing of death during early childhood. Texas Birth Defect Registry data were used in a retrospective cohort study of 19 406 singleton, live-born infants, born with a CHD between 1 January 1996 and 31 December 2003 to non-Hispanic (NH) white, NH-black, or Hispanic women. Registry data were linked to death records to ascertain deaths through 31 December 2005. Kaplan–Meier survival estimates were computed and HRs and 95% CIs were calculated from multivariable Cox-proportional hazard regression models to determine the adjusted effect of maternal race/ethnicity on mortality for each specific CHD during the neonatal, post-neonatal and childhood periods. Racial/ethnic disparities in mortality were most pronounced during the post-neonatal period and persisted into early childhood. Among children who survived infancy, NH-Blacks with tetralogy of Fallot (HR=3.61; 95% CI 1.25 to 10.47), coarctation of the aorta (HR=3.13; 95% CI 1.15 to 8.54) and ventricular septal defect (HR=2.60; 95% CI 1.31 to 5.19) were more likely to die in early childhood compared to similarly affected NH-Whites. No statistically significant differences in timing of death after infancy were found for Hispanics vs NH-Whites. Racial/ethnic disparities in timing of death in childhood for specific CHD diagnoses are present but of unknown aetiology. Elucidation of factors associated with early childhood CHD mortality will aid in development of public health and clinical strategies to reduce racial/ethnic disparities in childhood mortality.