Cochlear Implants in Children: Ethics and Choices

CHAPTER 3. Pre-Implant Issues

67 CHAPTER 3 Pre-Implant Issues When we met with parents, we asked them to describe the process leading to the realization that their child was deaf. Most of them learned of their child’s deafness quite gradually, except, of course, in those cases where the child had an illness, such as meningitis, which caused an immediate loss of hearing. In the absence of early screening for hearing loss, it was difficult for many parents to determine if their child was deaf until the child was at least several months old.In fact, this delayed awareness was the case for almost all of the parents we talked with, since they were not expecting a deaf child and had little familiarity with deafness . Moreover, many of these parents, like most parents, were not sure how much children were “supposed” to hear during the first year of life, or how a hearing infant typically reacts to sound. Only four of the families in our sample became aware of their child’s deafness at birth, or shortly thereafter, primarily because early screening happened to be available at the hospital where their child was born, or because they specifically requested it. Of course, not all of the children were deaf at birth, but most of them probably were, even though the parents did not realize this until months later. Of the parents who discussed this issue with us, about a third of them became aware of their child’s deafness before the child was 12 months old, and about half learned of their child’s hearing loss between 12 and 24 months. Only a small handful learned of their child’s deafness after 2 years, and in many of those cases deafness was due to meningitis. The question of how parents became aware of their child’s deafness is one that caused many parents to look back in both wonder and, sometimes, anger, at the delay in getting the “official” word that their child was deaf. Many parents had suspicions months before they were able to get confirmation, either from an electrophysiological procedure such as an auditory brainstem response (ABR) test, a passive test that measures the electrical activity of the brain in response to sound, from the absence of a response from their (presumably alert) child in a hearing test in a sound-proof booth, or from another test (such as a tympanogram that measures the condition of the eardrum and the middle ear, or an otoacoustic emissions test that measures the functioning of the cochlea) (Copmann , 1996). Several parents said that they initially became suspicious when their child did not react to loud noise. Even though many parents were suspicious several months before a final diagnosis was made, some tried to ignore or otherwise explain away the fact that their assumptions about their child’s“normal”hearing ability were being challenged. FATHER: It didn’t even occur to us that there was a possibility [that she might be deaf].We just slowly . . . began to realize that [our daughter] wasn’t responding to her name. MOTHER: [Our] daughter might be confused, because we speak two languages, and so we always thought that [she] was just delayed. . . .We would tap and she still wouldn’t look at us . . . and she wouldn’t turn, but it never occurred to us that she couldn’t hear. The father finally recognized that his daughter was probably deaf rather suddenly: One day, I was taking a nap with [my daughter] and it just hit me that I didn’t think she was hearing . So I put an alarm clock next to her ear. She didn’t wake up, so that’s when I realized. . . . Parents of a 3-year-old girl implanted in 19981 68 PEDIATRIC COCHLEAR IMPLANTS 1. Unless otherwise noted, ages given for the children at the end of the quotations are as of 1999. MOTHER: We suspected that there might have been a problem . . . when [our son] was maybe 4 or 5 months old.We noticed that he was not consistently responding to sounds.We were able to vacuum in his room when he was asleep, and it wouldn’t wake him up. . . . So we took him to the pediatrician and asked. The pediatrician snapped his fingers in front of [our son’s] face and [our son] blinked. INTERVIEWER (seeking clarification): Snapped his fingers behind his head? MOTHER: No, in front of his...