Status of a group of spina bifida children not managed by early surgery.

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.