Sunday, March 7, 2010

Part One: Hearing Loss Denial

Today's post is the first in a three part series based on the research paper, Are 1 Million Dependents with Hearing Loss in American Being Left Behind?  By Sergei Kochkin, PhD; William Luxford, MD; Jerry L. Northern, PhD; Pam Mason, MED; and Ann Marie Tharpe, Phd.

The study seeks to shed light on why 1.2 million dependent children in the United States have hearing loss but do not use amplification.  A survey was sent out to parents of hearing impaired children and the research paper highlighted their responses.  It's a worthwhile read for anyone interested in advocacy for young children with hearing loss.

The most popular reason for not aiding a child (in this study) is denial.  Especially parents faced with a mild hearing loss might feel that the problem is not that bad.  In many cases, this feeling is echoed by professionals.  Audiologists, family physicians, and pediatricians were reported to advise parents that hearing aids were not needed or wouldn't work for their child.

These same parents reported that their children experience a host of problems including speech delays.  These kids turn up the TV to levels that are uncomfortable to other members of the family.   They can't hear normal speech.  The experts writing this study concluded "a hearing loss below 35 dB in the better ear is considered 'mild'.  Yet we know that, for a child in a classroom, this is worse than stuffing their fingers in their ears."

Even with a higher degree of hearing loss, I have experienced denial.  I know that Julia can hear without her aids.  She was even learning to talk.  I wondered before her ABR, is she just ignoring us?  It's easy to think that a child can hear when they want to or when it's important.  It's important to have the perspective of professionals to help decide it hearing aids are necessary.

In many parts of the country, the quality of medical care varies.  Here in Pittsburgh we have pediatric audiologists and the best in ENTs and pediatricians.  Even with what I consider to be a wealth of great medical resources, I've already ditched a pediatrician because of my child's hearing loss.  I was asked on at least four occasions by this pediatrician, "is that a cochlear implant?" of my child's hearing aids.  I thought it was strange that she wouldn't know the first time.  But on each subsequent visit, after I told her, she still didn't know.  I changed doctors and eventually switched practices because the doctors were so ill informed about her condition.

Doctors are just people.  They might not know much about pediatric hearing loss.  An audiologist that works almost exclusively with adults is not going to give you the kind of insight one trained to work with kids will.  They may not even have the smaller sizes of inserts and proper equipment.  As a parent of a child with any level of hearing loss, you have to advocate for your child.  If their vision was blurry you would get them eyeglasses.  There's no reason to let them miss 50% of conversational speech if hearing aids could help (this would be caused by a mild hearing loss with a pure tone average of 35 dB).

My experience is with only one child with moderate-to-severe hearing loss.  I can't insist that every child with hearing loss needs hearing aids, but many do and they aren't getting them.  At the very least, be sure you seek out professionals trained in diagnosing pediatric hearing problems so you can achieve the best outcome for your child.

Here are some other articles to consider about "minimal" hearing loss:  Even Minimal, Undetected Hearing Loss Hurts Academic Performance and Mild and Unilateral Hearing Loss.  Next Sunday's post will cover the stigma of hearing aids as a barrier to providing amplification for children.

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