Guiney E J, Fitzgerald R J, Blake N S, Goldberg C
Z Kinderchir. 1986 Dec;41 Suppl 1:16-7. doi: 10.1055/s-2008-1043388.
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.
在克伦林圣母儿童医院，对于患有脊柱裂的新生儿采取的是个性化护理政策。这意味着，根据经验显示，那些无法长期存活的患儿不会接受给婴儿及家长带来痛苦和创伤的手术。他们会得到全面的保育护理。在此基础上接受治疗的少数患儿茁壮成长。问题是这种方法是否会使他们进一步致残。由于这是一个令家长和临床医生都担忧的问题，本研究回顾了这些存活患儿的现状。在1979年至1983年的五年期间，共有192名患有开放性脊髓脊膜膨出的婴儿入住圣母儿童医院。66名接受了早期手术干预。75名未接受任何手术，平均在46天时死亡。51名患儿接受了晚期干预，尽管如此仍有29名死亡。一组22名患儿存活，年龄在3至7岁之间。这22名患者的首次入院平均时间为77天，且过程顺利。然而，这22名患儿均严重致残；全部截瘫，大小便失禁，且都有一定程度的智力障碍。所有人都有中度至重度脑积水，17人已接受分流手术。在这22名存活患者中，我们在初期无法确定明显对婴儿智力或身体健康造成额外损害的具体事件或发展情况。
