Long-term outcome of children with high tetraplegia and ventilator dependence.

BACKGROUND/OBJECTIVES: Since 1978, 350 children with ventilator dependence, including 49 with spinal cord injuries (SCIs), have been followed at the University of Michigan C.S. Mott Children's Hospital. Some data were kept on these children prospectively and included in various studies relating to their outcomes and quality of life. This study was designed to determine physical outcomes of children with SCI and long-term mechanical ventilation (LTMV) and to determine predictors of quality of life for children with SCI and LTMV. METHODS: Prospective data collection and retrospective chart reviews were conducted for all 49 children with SCI and LTMV followed at the University of Michigan C.S. Mott Children's Hospital from 1978 to 2003. RESULTS: Of the 49 children with SCI and LTMV, 25 are alive, 16 have died following initial hospital discharge, and 8 have been lost to follow-up. Age at injury was under 5 years for 15, 5 to 9 years for 12, 10 to 14 years for 9, and over 14 years for 13. Forty had high tetraplegia, 7 had low tetraplegia, and 2 had paraplegia. Forty-two had ASIA A injuries, and 7 had ASIA D. All were discharged to their own homes or foster care. CONCLUSION: Our research studies of children with ventilator dependence with and without history of SCI have examined daily activities, perceptions of their quality of life, and their health and medical complications. This study compares individuals 16 years of age and older with matched control groups of those with tetraplegic SCI who do not use ventilators and those with other diagnoses who use home ventilation. Overall, these children have done remarkably well medically and psychologically.