Long-term follow-up of home mechanical ventilation in young children with spinal cord injury and neuromuscular conditions.

Abstract

To provide outcomes of two decades of experience in home ventilation of children with spinal cord injury and neuromuscular conditions. Data were collected through chart review and interviews on 39 children who had become ventilator-dependent before their 6th birthday; 23 children had neuromuscular diseases and 16 had spinal cord injuries. Patients required an average of 0.7 rehospitalizations per year. There were 8 deaths. Survival rates were 97% at 1 year, 97% at 3 years, 84% at 5 years, and 71% at 10 years. Thirty children attended school, 13 were in regular school (1 at university level), 5 were home-schooled, 5 were in special education schools, and 5 were in regular school with some special education classes. One graduated high school, and another graduated university and received a graduate degree. Three children had progressive weakness. Two gained significant muscle strength. Our experience showed that these patients can be discharged to home with low morbidity and mortality rates and successful reintegration into the community.