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Aim  To conduct a 50‐year complete, community‐based, prospective cohort study to investigate long‐term survival, causes of death, and influence of level of the lesion in treated open spina bifida.    Method  The cohort comprised 117 consecutive cases whose backs were closed non‐selectively at birth between 1963 and 1971 in Cambridge,  UK . In 2013 we surveyed the survivors ( n =39, 18 males, 21 females; mean age 46y, range 43–49y) by postal questionnaire and telephone interview. We compared outcomes in those born with a neurological deficit in terms of sensory and motor levels of L1 and above versus L2 and below.    Results  Two‐thirds of the cohort (78/117) had died. Causes of death were cardiorespiratory ( n =26), neurological ( n =24), urological ( n =22), or other ( n =6). Only the urological deaths were related to level of the lesion: there were none in those with a sensory level of L2 or below ( p <0.001). Birth findings also predicted survival: of the 57 infants with a neurological level of L1 or above, only 12% ( n =7) survived compared with 55% (30/55) of the remainder ( p <0.001).    Interpretation  The increased mortality in those born with an extensive neurological deficit was mainly due to urological deaths. Neurological level, particularly the sensory level, is the best predictor of long‐term outcome and should be assessed routinely at birth.

Neurological level at birth predicts survival to the mid‐40s and urological deaths in open spina bifida: a complete prospective cohort study