Cochlear Implants in Children: Ethics and Choices

CHAPTER 8. Looking Back: Overall Progress and Satisfaction

203 CHAPTER 8 Looking Back: Overall Progress and Satisfaction Almost all of the parents we talked with put a considerable amount of time and energy into the cochlear implant decision, as well as their child’s post-implant habilitation, and we wanted to know whether, in retrospect, they felt it was “worth it.” Are they pleased with the decisions that they made, sometimes in collaboration with their child? Would they do anything differently if they were going to do it all over again? Most of the parents we talked with are clearly pleased they made the decision to implant their child. This conclusion is perhaps not too surprising, given the nature of our sample. As noted previously, the families we talked with are undoubtedly skewed toward the “success” end of the pediatric implant success-failure continuum. Even though success stories are overrepresented, parental retrospection is nevertheless useful since a number of interesting issues emerged in our discussions with parents on this point that might have otherwise remained obscure. Parent Perceptions Although most parents are generally pleased with their child’s overall progress with the implant, more than half of the parents we talked with also said they wish their child could have gotten a cochlear implant earlier. This is especially true for parents of some of the children who were not implanted until they were 5 years of age or older. However, even a few of the parents of children who were implanted as young as 2 said that, if they could do it over again, they would try to have their child implanted at a younger age. Early implantation, in their mind, would presumably make it easier for their child to develop spoken language. Even so, many said that, occasionally, they still have second thoughts about the procedure, even if, on balance, they are glad they did it.Other parents said they wish they had been more aggressive in seeking out the services, such as speech and/or auditory training, they now realize were initially insufficient.Some said they wish they had started signing earlier, even before their child received an implant, so that language development could have started much sooner than it did. A few parents said that their child’s earlier educational situation could have been better. And, not surprisingly perhaps, several parents said that they would try to find a more knowledgeable or understanding pediatrician if they could rewind the tape and start over. A small number of parents said that, since their child was not benefiting very much if at all from the implant, they wish they had not gotten the implant in the first place. In addition, the one parent we talked with who decided against implantation remains pleased that the family made that decision.1 Some of the comments from parents on these issues that we present below do indicate that looking back does not always bring complete peace of mind, even for parents who are pleased with their decision.We often saw expressions of regret for “what might have been”among parents whose children experience very different degrees of success with the implant. 204 PEDIATRIC COCHLEAR IMPLANTS 1. On this point, readers may be interested in an account of another family’s decision against cochlear implantation (Peters, 2000).We did not interview this family. MOTHER: I don’t know if I would still make the same decision. Now [my husband] will say something different, but I don’t know if I would still make the same decision that . . . we’ve got to get you this implant so that you have the opportunity to hear.Which I still think is good, but after meeting so many deaf people and learning more about the [residential] school and opportunities . . . I don’t know if I would make the same decision now. But I’m happy we did it. I still think we needed to give him every opportunity that we can, that we could. I think we’re happy with it. FATHER: The most important thing was that he needed to be able to speak, to communicate. . . . In order for him to be successful in the world, not just in the deaf community, but in the world, I really felt that he needed spoken language . And that might be a little narrow-minded, but I’m his father and I can be narrow-minded if I want to. . . . And I still feel that...