Epidemiology of Brain Death in Children in the United States: A National Database Study

Introduction: Changes in guidelines for brain death (BD) evaluation and clinical practices may influence the incidence of BD diagnosis among all deaths. The primary objective of this study was to evaluate the incidence and trend of BD diagnosis, and the secondary objectives were to compare demographic and clinical characteristics of BD patients with non-BD patients among all hospital deaths in children in the US.


Methods: This is a retrospective, serial, cross-sectional study of all children (1 month to 20 years) who died in the hospitals using the Kids’ Inpatient Database for the years 2012, 2016, 2019, and 2022. ICD codes were used to identify BD and other variables. The etiology for BD was grouped into traumatic brain injury (TBI), focal brain lesions (brain tumor and stroke), CNS inflammation (encephalitis/meningitis), hypoxic-ischemic brain injury (HIE), and others. The groups were compared using chi-square, Mann-Whitney U, Kruskal-Wallis tests, regression, and linear trend analysis.


Results: Out of 9,140,494 discharges, 32,880 (0.36%) died during the study period. Among all hospital deaths, 6,838 (20.8%; 95% CI: 20.3-21.3) were declared BD. The proportion of BDs increased from 18.4% in 2012 to 22% in 2022 (p < 0.001 for linear trend). On regression analysis, BD was more prevalent in males, older age groups, in South and West regions, in summer months, in the lower income quartile, and in patients with TBI (p < 0.05). The most common etiologies in BD patients were HIE (59.5%) and TBI (22.1%). Median length of stay for BD patients was shorter (3 [1-5] vs 5 [1-18] days; < 0.001). The age and length of stay varied with etiology among BD patients (TBI patients were older and had a lower LOS; p< 0.001). Diabetes insipidus (DI) was documented in 31.6% of BD patients and varied with the etiology (lower in TBI and others; p< 0.001). In our institutional data, 40% of DI+BD and 36% of BD patients had ICD codes for DI.


Conclusions: Our study reports the incidence, trend, and characteristics of BD patients among all hospital deaths in children in the US. An increase in BD diagnosis may be related to changes in clinical practices that need further exploration. The low prevalence of DI in this study may be due to documentation issues with administrative databases.