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PAPERS: Gillian M Hunt and Pippa Oakeshott Outcome in people with open spina bifida at age 35: prospective community based cohort study BMJ 2003; 326: 1365-1366 [Full text]

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Life with spina bifida

Alison Davis   (24 June 2003)

Life with spina bifida 24 June 2003
Alison Davis, Patient Home DT11 0LE Send response to journal: Re: Life with spina bifida	Dear Sir, I read this article with great interest, as it was of particular relevance to me. I have myelomeningocele spina bifida, and had surgery 48 years ago in Manchester, then one of only two Centres performing such surgery. I now use a wheelchair full time. I also work full time. I have had many operations (I lost count after 20), and now have severe spinal pain which is not always well controlled even with morphine. Although I found the article of interest I was extremely concerned at the conclusion: "Given the limited benefits of treatment, the data we have gathered ... provide those involved with counselling families affected by spina bifida with the clinical evidence to help them make informed decisions." There are several very worrying implications of this statement. The most important is the suggestion that "informed decisions" are to be made about treating babies with spina bifida. I recall that Professor John Lorber of Sheffield argued as long ago as the early 1980's that some babies with spina bifida should not be given surgery. He cited five criteria for operating, suggesting that a baby must satisfy all of them to be deemed worthy of surgery. I would have failed four of the five. Now this article seems to be continuing that tradition by suggesting that "decisions" to be made at the time of birth might include a decision not to operate, because the baby would face a life of severe disability. This article also confusingly speaks of "families affected by spina bifida." It is not the family, but the individual baby who has spina bifida and s/he is entitled to the same presumption in favour of life given automatically to babies without a disability. The choice is not between life with or without spina bifida. Rather it is between life with disability or death. We each have only once chance of life. It is offensive to suggest that death might be preferable to living with a disability. Sometimes doctors have tried to justify non-treatment policies by arguing that I am somehow "exceptional." The truth is that I would never have had the chance to be exceptional or anything else had I been denied early treatment. I suggest it is time to stop hiding behind comfortable euphemisms like "informed decisions." If the decisions are entirely ethical, spell them out. If not, perhaps it is time to stop treating disabled babies as less than fully human. Yours faithfully, Alison Davis Competing interests:   None declared