Objectives: To provide outcomes of two decades of experience in home ventilation of children with spinal cord injury and neuromuscular conditions.
Study design: 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.
Results: 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.
Conclusions: Our experience showed that these patients can be discharged to home with low morbidity and mortality rates and successful reintegration into the community.