The adolescent with myelomeningocele: a review of parent experiences and expectations

Until recently, persons born with spina bifida rarely lived to adulthood, and the severity of their physical and medical problems has been the source of litigation (e.g., Baby Jane Doe). This study questioned the parents of 39 adolescent survivors about their child's past medical history and psychosocial needs. While all of these adolescents had extensive histories of neurological and/or urological surgeries, most were mainstreamed into regular classroom settings. Three-fourths of the parents rated their adolescent as happy and outgoing. Less than 10% noted a predominant angry or depressed mood. The majority of adolescents had three or more close friends. About 10% stated that their child had problems with alcohol or drugs. Parents evaluated the support they had received on the medical and physical aspect of their child's illness as greater than that on psychosocial issues (e.g., sexuality, vocational needs). The desire for more assistance was expressed in these psychosocial areas (45% for sexuality and 68% for vocational needs) and in teenage issues (57%).