Adolescents with Meningomyelocele

The multiple physical and health problems that the child with myelodysplasia brings to adolescence have been described in some detail. The variations from the normal ranges of adolescent development, which this group of patients show, will exaggerate some of the problems of social and emotional adjustment, and the growth and hormonal changes of adolescence may exacerbate such problems as hydrocephalus, renal insufficiency, and scoliosis. Fortunately, not all of the problems are experienced by each patient and they do not occur suddenly and simultaneously but rather extend over the patient9s life. Some of the problems can be minimized by the type of care undertaken in the child9s earlier years. The complications of gross cephalomegaly due to untreated hydrocephalus and the risk of early death due to renal failure in those patients with treated hydrocephalus have now virtually disappeared for children who survive to the age of adolescence. It is realistic to think that improvements in stabilization of the spine and management of the bladder will as markedly reduce those serious complications in infants and young children now entering treatment programs. Unfortunately, no matter how much progress there is in the medical and surgical management of children with meningomyelocele, they will still have the problems of paraplegia. Our task, then, is to communicate to their families what previous patients have taught us about these problems: how to avoid unnecessary secondary complications and how to assist the children and other family members in their continual growth and development. With early emphasis on having the child develop appropriate self-care skills, we are seeing fewer children enter their adolescence still dependent upon adults for toileting and for care to prevent decubiti. The physician who has been caring for a child with myelodysplasia from early infancy, who is familiar with the family9s ability to cope, and who is well informed about the patient9s condition should be the best health guide through adolescence. Unfortunately, the complex nature of the early medical-surgical problems often side-tracks the family from local medical care. Current ease of telephone communication makes it possible to offer the consultation of the speciality clinic to the local physician and every effort should be made to establish and maintain primary care resources and responsibility in the local community. In some communities, there will be a pediatrician, in others a family physician, public health nurse, or visiting therapist. Probably the most effective advocate in lobbying for societal changes that will allow all of our citizens to reach their potential will come from those directly involved. Programs such as the Special Olympics and wheelchair sports, and volunteer groups that provide activities socially appropriate for this age group, need to be supported and expanded. Increased assistance under the Developmental Disabilities Act, which mandates educational programs for the physically handicapped as well as for retarded individuals, will help meet the special requirements of this population. Vocational counseling through such agencies as the Division of Vocational Rehabilitation is available in most states, and most involved professionals are aware that such counseling needs to be extended to younger age groups and mesh with early educational planning. Social workers and public health personnel should directly assist the young patient in obtaining funds for continued medical care, driver9s training, and housing through such programs as Social Security Insurance, Medicaid, and special loans for housing for the physically disabled. Attachment to a citizen advocacy group, such as the Spina Bifida Association of America (343 S Dearborn Ave, Chicago, IL 60604), will afford the support of a large network of individuals who have already solved many of the problems and who will be most responsive to the need for further active involvement in improving the welfare of all handicapped persons.