Early childhood developmental skills of children with tracheostomies and ventilators recently discharged home.

BACKGROUND: Infants who survive prematurity and critical illnesses but require ongoing invasive mechanical ventilation (IMV) are at high risk for developmental disabilities. However, their detailed developmental profiles are largely unknown. OBJECTIVE: To understand the developmental profiles of a cohort of young children with IMV after hospital-to-home transition. DESIGN/METHODS: Developmental testing was completed 1 month after hospital discharge to determine functioning within motor, cognitive, and communicative domains using (1) the Clinical Adaptive Test/Clinical Linguistic and Auditory Milestone Scale (CAT/CLAMS); (2) the Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT); and (3) The Warner Initial Developmental Evaluation of Adaptive and Functional Skills (WIDEA-FS). To complement validated testing, semi-structured interviews were conducted with parents to understand perceived influences on neurodevelopment. RESULTS: Twenty children were evaluated at median (range) age 11 (5-27) months. Nearly half (45%) were male, 40% non-Hispanic Black, and 25% Hispanic. Sixteen (80%) children were survivors of prematurity. After gestational age correction, median (range) full-scale developmental quotients (DQ) were 69.5 (8-119): CAT DQ 62.5 (3-113) and CLAMS DQ 71.5 (12-125). Parents described that prolonged restriction within the hospital crib away from caregivers, despite hospital therapists, impedes development. Home environments improve development primarily through increased time with parents, but also play outside of the crib. One month after hospital discharge only 10% were receiving early intervention therapies. CONCLUSIONS/SIGNIFICANCE: Children with IMV display wide ranges of neurodevelopmental skills with a majority experiencing substantial delays in motor, communicative, and adaptive functioning. The degree and cross-domain challenges highlight the need for targeted and timely therapeutic strategies.