Parental attitudes to the unclosed open neural tube defect

Recent years have seen a trend away from the immediate closure to delayed or nonclosure of the back lesion in open neural tube defects (ONTD). Parental attitudes towards this more conservative surgical policy have not been investigated. We therefore surveyed 70 families in Northern Ireland of children who are still alive, over six months of age who had an ONTD which was not surgically closed immediately after birth. Fifty-eight parents (84%) responded. Most parents (84%) had no difficulty in handling or dressing the back, but three-quarters felt that the lesion was painful and 41% felt that its appearance was disturbing to other members of the family. In those who had delayed closure (n = 15) all parents confirmed that the child was more comfortable and easier to handle afterwards. Eleven of them (73%) felt that the child was more acceptable to the rest of the family and that surgery should have been carried out earlier. A third preferred immediate closure "to make the child more comfortable" and to "improve the general quality of life". However, 46% did not want surgery for fear of upsetting the status quo. This survey suggested that parental attitudes towards the open back lesion differ greatly and that these views should play a greater role in the decisions which influence the timing of closure of ONTD.