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At Our Lady's Hospital for Sick Children, Crumlin, the policy towards neonates with Spina Bifida is one of individualised care. This means that those children who, experience has shown, will not be long term survivors are not subjected to procedures that are distressing and traumatic to the infant and parents. They are given full nursery care. A small number of children treated on this basis thrive. The question arises whether or not they have been further handicapped by this approach. Since this is a problem which causes concern to both parents and clinicians, this study reviews the present state of these survivors. In the five year period 1979-1983, there was a total of 192 infants admitted to Our Lady's Hospital with open myelomeningocoele. 66 were treated with early surgical intervention. 75 died without any surgical procedure at a mean of 46 days. 51 children underwent late intervention, despite which 29 died. A group of 22 are alive, aged 3-7 years. The mean first admission of these 22 patients was 77 days and was uneventful. However, all 22 are severely handicapped; all are paraplegic, doubly incontinent and have some degree of mental handicap. All have hydrocephalus graded moderate to gross and 17 have been shunted. Amongst these 22 surviving patients, we have been unable to identify, in the initial period, specific events or developments which have clearly caused additional damage to the infant's intellectual or physical well-being.

Since 1974, 56 children with a neuropathic bladder were selected for intermittent or indwelling catheterisation. Indications for catheterisation included incontinence, hydronephrosis, and/or difficulty with bladder expression. Good results were obtained in 70% of girls and 50% of boys. The catheter was abandoned in 7 children, mainly because of lack of cooperation from the parents. Deterioration occurred only in those children with both hydronephrosis and vesico-ureteric reflux prior to catheterisation. Of the latter group of children, 33% suffered upper tract deterioration, and we now consider vesico-ureteric reflux to be a relative contra-indication to catheterisation, except in those children with severe disabilities and deformities, in whom antireflux surgery or urinary diversion would be unacceptable or technically difficult. Indwelling penile catheters should not be recommended for boys, but catheterisation via a perineal urethrostomy may prove helpful in those unable either to catheterise themselves intermittently or to wear a penile appliance.

88 patients with thoraco-lumbar myelomeningocele not operated upon in the 1976-1977 period were compared with 76 patients with the same condition operated upon in the 1964-1971 period. There was no significant difference in sex and hydrocephalus at birth in the two groups. Mortality was less in the surgically treated group only after the age of three months. Ventriculitis appeared to be related to the incidence of hydrocephalus in the surgically treated group. There was a reduced risk of developing progressive hydrocephalus after birth in the untreated group, and the neurological status of the survivors at one year was the same in both groups. Interpreting the results as indicating that early surgery increased the incidence of progressive hydrocephalus and ventriculitis, and might increase survival of more disabled infants, then non-surgical treatment is justified since survivors are no worse as a result of this non-active approach.

I believe meningomyelocele is not vanishing, but is a new and diminishing disorder. Prenatal diagnosis will be accepted only by a portion of most communities if abortion is the only alternative to the delivery of an impaired child. I believe participation in neural tube screening programmes can be increased by offering improved pregnancy outcome with concomitant prelabor caesarean section in addition to termination. Regardless, the prevalence at birth of children with myelomeningocele will decrease both in total numbers and in the severity of the expressed lesion. The resultant rarity will require collaboration between centers to evaluate treatment. The developing International Myelodysplasia Study Group using a Patient Data Management System and computer-assisted analysis is a model of successful collaboration that allows better exploration of the multiple variables that contribute to the well-being of children with open neural tube defects of the spine.

Residents of Sheffield, U.K., aged 16-21 years with myelomeningocele were interviewed to ascertain morbidity in the preceding 12 mths., current and past use of hospital and community health care resources, and dependence on carers. Twenty-one patients, representing 49% of those known to paediatric services, responded. In the previous year, 71% of the group had been ill due to their spina bifida. 81% of subjects received hospital supervision, mostly by a urologist. Many hospital contacts had been lost, mostly by age 18 years. Little use was made of community health services or general practitioners. The majority of patients were dependent on their parents for management of incontinence, and care of skin vulnerable to pressure sores. 52% of respondents were dissatisfied with current provision of health care. Particular need was expressed for community nurses and physiotherapists.