Fellow Indiana University School of Medicine Indianapolis, Indiana, United States
Background: Congenital heart disease (CHD) is the most common birth defect and significantly contributes to infant morbidity and mortality, often requiring surgical or transcatheter intervention within the first year of life. Prenatal diagnosis of CHD improves postnatal outcomes and provides an opportunity for parental counseling and birth planning. Anatomic lesion, birth weight, and underlying genetic diagnoses are factors that predict outcomes such as postnatal hospitalization, surgical and medical management, and mortality. However, there has not been a comprehensive evaluation of all knowable factors that might influence outcomes, nor is there a method for aggregating those factors to provide a more precise prediction of fetal, neonatal or infant outcomes. Objective: To determine which prenatal and early neonatal factors predict neonatal and 1-year outcomes in patients with congenital heart disease. Design/Methods: A retrospective cohort study will be conducted among neonates with congenital heart disease who were admitted to the Riley Heart Center and/or Riley Simon Family Tower Level IV neonatal intensive care unit between 2021 and 2023. IRB exemption was obtained in April 2023. Data is being collected regarding maternal health conditions, fetal ultrasound findings, maternal demographic data, and delivery outcomes. Additional patient data will include fetal/neonatal genetic test results, echocardiographic findings, and specifics of the initial inpatient stay. Data will also be collected about any hospitalizations during the 1st year of life as well as 1 year mortality. An outcome classification system will be developed, and statistical analyses will be performed over the next several months to determine which factors are associated with each outcome classification. The factors identified as being significant predictors of 1-year outcomes in patients with CHD can then help to create an outcome risk calculator to be used by clinicians, prenatally or in the early neonatal period, to better prepare families regarding the medical needs and range of outcomes for their child.
