Anyone who has ever cared for a child knows the kind of emotional investment and responsibility that comes with it. So many of your hopes and your dreams “for the better world to come” are tied up in those goofy never-at-rest little bodies. For most of us when we shuffle off this mortal coil, our personal or professional accomplishments will inevitably pale in importance compared to the job we did influencing (for better or worse, I suspect) the lives of others, especially those of children.
Recognizing this, and assuming that it’s a fairly universal sentiment, it seems shocking that between one-half and one-third of all newborns who are determined at risk for hearing loss by newborn hearing screening programs are not brought back for follow-up testing. In other words, the parents are informed that their child might have a serious hearing impairment, but they do nothing to confirm or rule out the disability. I understand that much of this could be due to the factors I described above: the parents have so much emotional investment in their kids that they enter a state of denial when facing the possibility of a “physical disability” in their perfect baby. How many times have we all wondered how we’d react to getting this type of news? Even though most (maybe as much as 80%) of rescreenings show that the infant has normal hearing, it would be a scary trip to the hospital, indeed.
Similarly, in all cases of childhood hearing loss, the evidence is clear that children need early intervention and a multiprofessional approach. One can get into a fairly heated debate about the responsibilities of parents and the appropriate lines that a healthcare professionals must toe when dealing with these situations. However, the article by Kochkin et al in this edition of HR suggests that there may not be enough urgency being transmitted to parents. Although it should be acknowledged that the study represents subjective comments from only 225 parents, the article suggests that there are cases of misinformation (or misinterpretation of information) from hearing care professionals, lack of knowledge or trivialization about hearing loss by pediatricians, ineffective public healthcare policy for the provision of hearing aids, and a general lack of urgency and advocacy by parents.
Karen Anderson, PhD, wrote an article in the November 2002 HR called, “The Magic Ingredient for Successful Child Outcomes.” In a nutshell, Anderson’s “magic ingredient” is parental involvement, and she cites nine things that parents have to “buy into” for the intervention process to work: 1) Their young child really has a hearing loss; 2) The hearing loss will really cause the child to develop or learn differently from other children if no intervention is obtained; 3) The hearing loss will not go away; 4) Hearing loss typically means having some useful hearing (ie, not totally deaf); 5) Having some hearing loss does not mean that the child can learn to “get by” without intervention just because he or she is a smart or exceptional child; 6) There is more to intervention than putting hearing aids on the child; 7) The hearing loss will still be an issue in how the child is able to access communication in different listening situations; 8) Communication access is the real issue, not the hearing loss; 9) Parents, caregivers, and peers are the “magic ingredients” that ensure the communication access that will allow the child to develop at as normal a rate as possible.
No one in our field would disagree that, with pediatric patients, there is a need for everyone in the chain—UNHS programs, pediatric and educational audiologists, pediatricians, educators, government programs for the provision of hearing aids, and the children’s parents and support networks— to look at the problem seriously, understand it, then step up and deliver the required services.
But the most important link in the chain is the parent. A parent’s job is to be the advocate for their child. In order to make informed decisions about their child’s hearing care, parents need to know the cold, hard facts: A lack of communication access is a serious problem that must be dealt with urgently, or it may negatively impact virtually every aspect of their child’s life.