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Status of a group of spina bifida children not managed by early surgery
Insights
This study reviews the outcomes for neonates with Spina Bifida receiving individualized care. While some survivors thrive, all 22 studied experienced severe handicaps, with no clear initial events identified as causing additional harm.
Area of Science:
- Pediatric Surgery
- Neonatal Care
- Developmental Pediatrics
Background:
- Our Lady's Hospital for Sick Children, Crumlin, employs individualized care for neonates with Spina Bifida.
- This approach avoids distressing procedures for infants and parents unlikely to survive long-term, providing full nursery care instead.
- A subset of these infants do thrive, raising questions about potential additional handicaps from this care strategy.
Purpose of the Study:
- To review the current condition of survivors treated under an individualized care policy for Spina Bifida.
- To assess whether the individualized care approach has resulted in further handicaps for surviving neonates.
- To address concerns of parents and clinicians regarding the long-term outcomes of these children.
Main Methods:
- Retrospective review of 192 infants admitted with open myelomeningocoele between 1979-1983.
- Analysis of treatment pathways: early surgical intervention, no surgery, or late intervention.
- Detailed assessment of the 22 surviving patients aged 3-7 years, focusing on physical and cognitive status.
Main Results:
- Out of 192 infants, 66 had early surgery, 75 died without surgery, and 51 underwent late intervention with 29 deaths.
- A cohort of 22 survivors (aged 3-7 years) were identified, all with severe handicaps including paraplegia, incontinence, and mental handicap.
- All 22 survivors had moderate to severe hydrocephalus, with 17 requiring shunts; no specific initial events were linked to additional harm.
Conclusions:
- The individualized care policy for neonates with Spina Bifida results in a group of severely handicapped survivors.
- Despite significant challenges, no specific early factors were identified as exacerbating the infants' intellectual or physical well-being.
- Further research may be needed to understand the long-term trajectory and optimal management of these complex cases.
Abstract:
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.