MYELOMENINGOCELE: THE OUTCOME 20 YEARS LATER

Abstract

We conducted a long-term follow-up study to determine the functional status and level of social integration of 67 children with myelomeningocele. All of them attended a Spinal Defect Clinic for at least four years between 1968 and 1979, and all attended a Rehabilitation School for at least four years, either as day scholars or as boarders. An analysis of their functional walking abilities was presented at the congress in 1979.

Hospital and school records were obtained, and patients were asked to complete a questionnaire about their marital status, children, employment and educational status. Further questions asked about change in ambulatory status, sphincter status, urinary tract problems, numbers and types of operations performed after 1979, and whether they were satisfied with the results.

We traced 55 of the 67. There had been 12 deaths, most as result of urosepsis. Many patients had moved from the area. Many were in homes or living secluded lives and unwilling to get involved. Many patients had undergone more surgery, particularly amputation of the feet or legs. After leaving the Rehabilitation School, many patients became wheelchair-bound: these were extremely unhappy and felt they had been misled by the promise that they would continue to walk. All were over-weight.

The 10 patients who had spinal surgery were delighted with the result. Many were happy with the medical management and education they had received in childhood, and felt privileged to have their support systems. Many were gainfully employed and married with children.

The long-term follow-up study revealed that in adulthood the order of priorities of these patients remained the same as in childhood and adolescence. Most important was communication, then activities of daily living. Transportation and ambulation were secondary issues.