Autism and neurodevelopmental disability risks in children with tracheostomies and ventilators

Abstract Background/Objective Infants who survive prematurity and other critical illnesses and require continued invasive mechanical ventilation (IMV) postdischarge (at home) are at high risk of developmental delays and disabilities. Studies of extremely preterm cohorts (<28‐week gestation) demonstrate rates of 25% for intellectual disability (ID) and 7% for autism spectrum disorder (ASD). Rates of ASD and ID in children with IMV are unknown. This study aimed to determine neurodevelopmental disability risk in a cohort of children with postdischarge IMV. Design/Methods A consecutive series of children with IMV were assessed 1 month, 6 months, and 1 year after discharge. Cognitive, social, and communicative domains were assessed by a Developmental and Behavioral Pediatrician using (1) clinical adaptive test/clinical linguistic and auditory milestone scale (CAT/CLAMS) of the capute scales; (2) pediatric evaluation of disability inventory computer adaptive test (PEDI‐CAT); and (3) modified checklist for autism in toddlers, revised (MCHAT‐R). Red flag signs and symptoms of ASD using DSM‐V criteria were noted. Longitudinal testing was reviewed. Expert consensus impressions of evolving ASD and/or ID were determined. Results Eighteen children were followed for 1 year; at 1 year, the median age (range) was 23 (17–42) months. Children were 44% male, 33% non‐Hispanic White, 39% non‐Hispanic Black, and 28% Hispanic. Fifteen (83%) children were prematurity survivors. Median (range) developmental quotients (DQs): full‐scale DQ 59 (11–86), CAT DQ 66.5 (8–96), and CLAMS DQ 49.5 (13–100). Twelve (67%) children were highly suspicious for ASD and/or evolving ID. Conclusions/Significance This cohort of children with at‐home IMV demonstrates a higher risk of ASD and ID than prior premature cohorts. Larger investigations with longer follow‐up are needed.