Abstract

This article is drawn from a larger doctoral study that explored hearing mothers' experiences of discovering that their babies had a permanent hearing loss in Australia in 2008. The particular focus for this paper is the period in time after a concern is flagged, either by a newborn hearing screener or the mother herself, until a hearing loss is confirmed. A questionnaire, designed to identify participants in the larger study, returned a cohort of twenty-two mothers with ‘well-babies’ who were screened at birth. The results showed that diagnosis occurred for thirteen babies with minimal delay within the first 2 months of life. Of these respondents, seven mothers elected to be interviewed and tell their stories about the discovery of their child's hearing loss before their decision to have a cochlear implant. Although three mothers had babies diagnosed in the first 2 months of life, overall their accounts revealed a broad range of experiences, including their understanding of the inclusion of hearing screening in predischarge assessment, vague hearing screening language use to describe results, and variable waiting periods for repeat screen tests, audiologic assessment, and diagnosis. For two mothers, their newborn babies returned a negative screen result, yet they were found later to be deaf, while for the remaining two mothers, hospital error was responsible for the late diagnosis of their babies. Importantly, when these four mothers raised their concern about hearing at a later date, professional responses were often slow and lacked the urgency that is implicit in and fundamental to current policy for the early detection of hearing loss. These results suggest that (1) despite the roll out of newborn hearing screening programmes, test results alone are not definitive in the detection of hearing loss; (2) professionals still need to be attentive to mothers who raise concern about hearing; and (3) the clinical conversation remains crucial to the early identification of hearing loss even if otitis media with effusion appears to a be a cause for speech and language delay.

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