Ongoing Care

There are few conditions that require so many specialists to assure the best attainable result. The pediatric urologist, physiatrist, neurologist, orthopedist, and surgeon must all be involved in assessing these children and be involved on a regular basis. It was because of this necessity of multi-disciplinary care that spina bifida clinics evolved in which setting all the specialists are available at a specific time. Thus the child receives optimal care and the parents are spared the necessity of making many different appointments at many different times.

It is now recognized that at least 70% of children with meningomyelocele have normal intelligence. We now realize, however, that many children who are retarded sustained brain injury simply as a result of a intracranial infection and malfunctioning shunts, in an era in which technology and diagnostic scanning were less sophisticated than they now are.

Other children died between the ages of 3 and 5 from kidney failure. This danger too is being handled with more advanced methods, particularly intermittent catheterization. In addition, the development of artificial sphincters is progressing well and is expected to be very important in handling urinary incontinency which according to the children themselves, is the most distressing of all the sequelae of meningomyelocele.

Some 70% of those with this disorder are ambulatory, with or without support. This represents a large number of children who are being integrated into society, mainstreamed in schools, and who are very satisfied with the quality of life they have achieved.

Peter Semczuk,