Visually impaired children: “coming to better terms”

For a visually impaired child, the accurate establishment of the diagnosis provides information on the prognosis of his or her participation possibilities, including expectations about the need for care, and provides the basis for informed genetic counseling. To maximize the diagnostic value of electrophysiological testing, we use extensions of the standard ISCEV (International Society for Electrophysiology in Vision) protocols for both the ERG (electroretinogram) and the VEP (visual evoked potential). An overview of 3 years’ practice of the Department of Ophthalmology of Bartiméus, presented at ISCEV in Glasgow, showed that, as a result of our electrophysiological assessment, in about 10% of the cases the diagnosis at referral had to be changed from a progressive to a stationary disorder or the reverse. It is obvious that these parameters drastically change the strategy to attain “coming to terms with the disorder”. It turns out that for the visually impaired child or his or her parents as well as for the professionals in the rehabilitation institutes, the terminology used to describe a disorder can be unnecessarily alarming rather than comprehensible or even realistic. Terminology needs to be clear and understandable, with a clearcut distinction between the description of visual functions and the name of a disorder. In albinism, the bad connotation of the name of this disorder together with the finding of non-albinos with misrouting and definite albinos without it forces us to reconsider the nomenclature. With congenital stationary night blindness (CSNB), the finding of youngsters who are clearly capable of mobility at night and the fact that the term night blindness refers to a function instead of a disorder forces us even more to reconsider nomenclature.