Cause of death in preterm infants–the black hole of scientific reports on outcomes and prognostication a narrative perspective

Abstract Accurate determination of a cause of death (COD) is fundamental for neonatal quality assessment, parental counseling, and epidemiologic surveillance. Declining autopsy rates raise concerns about the reliability of assigned CODs. Misclassification of COD distorts mortality statistics, hinders understanding of preventable conditions, and limits opportunities for system-level improvement. This narrative review examines literature on infant COD determination and discusses discrepancies between clinically assigned and autopsy-confirmed CODs. Studies show that a substantial proportion of infants were misdiagnosed prior to autopsy. We supplement this with original data from the neonatal unit at Uppsala University Children’s Hospital in Sweden, illustrating discordance between clinically assigned and autopsy-confirmed COD and highlighting subgroups where autopsy proved valuable. Furthermore, we discuss declining autopsy rates and their implications for medicine, families, and quality assessment. Understanding CODs in infants is essential for advancing neonatology. Despite advances in diagnostic technology, autopsy remains the gold standard for determining COD and identifying missed diagnoses.