The characteristics of children requiring home positive pressure mechanical ventilation through a tracheostomy continue to evolve. We therefore conducted a retrospective review of children undergoing initiation of invasive home mechanical ventilation in the C.S. Mott Children’s Hospital Pediatric Ventilator Unit from 2012 to 2022. Our goals were to describe key diagnoses and outcomes. Electronic medical records were reviewed and data entered into a secure REDCap database. Two hundred and twenty-two children underwent initiation of chronic mechanical ventilation through a tracheostomy. Median follow up duration after initiation of chronic ventilation was 40 months. The median duration of ventilation was 30.8 months. Compared to the first five years of the review, there were more children with key diagnoses of lung disease and bronchopulmonary dysplasia (BPD) in the last five years of the study. In contrast, the number of children with neuromuscular disease decreased. Thirty-eight children died for an overall mortality rate of 17%. Mortality was highest in children with refractory seizures or other severe neurologic conditions (20 out of 68 children, or 29%). For extremely preterm and very preterm infants, most of whom had BPD, mortality was 7% (5 of 74 children). The median duration of mechanical ventilation for BPD patients was 25.3 months. Forty children had complex congenital heart disease. Of these, 32 had airway malacia. Mortality for this group was 23% (9 of 40 children). The mortality rate for children undergoing initiation of chronic mechanical ventilation via tracheostomy was 17%, with most deaths associated with severe neurologic disease.
Kreger et al. (2026) studied this question.