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

J Pediatr. 2003 May;142(5):476-80. doi: 10.1067/mpd.2003.47.


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.

Publication types

  • Case Reports

MeSH terms

  • Child
  • Child, Preschool
  • Female
  • Follow-Up Studies
  • Home Care Services*
  • Hospitalization / statistics & numerical data
  • Humans
  • Male
  • Neuromuscular Diseases / complications*
  • Neuromuscular Diseases / mortality
  • Neuromuscular Diseases / rehabilitation*
  • Patient Admission / statistics & numerical data
  • Positive-Pressure Respiration / instrumentation
  • Respiration Disorders / etiology
  • Respiration Disorders / therapy*
  • Respiration, Artificial / instrumentation*
  • Retrospective Studies
  • Spinal Cord Injuries / complications*
  • Spinal Cord Injuries / mortality
  • Spinal Cord Injuries / rehabilitation*
  • Survival Rate