Late Onset or Progressive Hearing Loss ~ Jennifer Kolb, AuD

Many audiologists can speak in great detail about the first time that they tell a parent about a newly identified hearing loss. Or possibly, they could also describe in detail the second, third or even the tenth time. A new diagnosis of hearing loss in an infant is understandably very difficult for more parents to receive. This can be especially difficult for a first time parent or if the child is very young. There is a fine line between balancing the right amount of information (which is different for every parent), leaving time to listen or sit in unhurried silence through processing, tears or shock while providing compassionate support. Sometimes, as audiologist Carolyn Edwards said in a recent article, audiologists need to get more comfortable with “not knowing, ” so that letting go of how a family or child might react opens us up to responding to the person or family in front of us, in the here and now.

What happens when hearing loss occurs later in childhood or progresses significantly? This news is typically such a surprise to parents, who have settled into a plan and a routine with their children, and very unexpectedly, the path changes course. Parents express everything from grief to relief that there is a reason for the difficulties the child may be having. The sense of urgency to move quickly with technology and playing catch up with services may distract from any difficult feelings parents are going through. This change in the plan, potentially new expectations and the sense of playing “catch up” can be overwhelming for parents. Audiologists again must share “the news”, but the context may be quite different with an older child. Guilt, grief, or worry may get buried as the “to do list” quickly builds. Feelings can be put aside but will linger under the surface, especially when parents and a son or daughter are changing course on a previously familiar path.

From my recent experience, there seems to be a significant number of children who passed a newborn hearing screening, but are then identified with a new hearing loss somewhere in the preschool years. Sometimes a child can go from identification with a mild or moderate hearing which may quickly move into the severe/profound range within a year, bringing about the discussion of cochlear implants candidacy. All of those changes represent a huge learning curve in a short time for both parents and child. It is not accurate to assume that once a child has been identified with a hearing loss that any further decreases in hearing will be “easy” for a parent to receive. Parents may even be holding their breath each time a child comes into the clinic, and the news that the hearing may have changed yet again can be very difficult for them to hear. Many pediatric audiologists are aware of this, but sometimes it can be overlooked in appointments filled with updating the history, checking in on school and therapy, testing hearing and equipment and keeping the child happy and included. Parents may dread audiology appointments due to fear of the hearing loss progressing. Although it is wise to be on alert, it is also encouraged to not lose sight of the present. Today is what we have to engage in, we can’t do that if focused on a worry in potential future.

Children themselves are also not immune to the worries of a possible progression of their hearing loss. Frequently, I see children who dread going into the booth because they know they are going to “fail the test”. And, who looks forward to “tests” when we know we aren’t going to do well. Often children come out asking how many they missed or if they did a good job. It can be helpful for audiologists and parents to discuss the testing with children to remind them that it is “not that kind of test”. It isn’t a matter of passing or failing, which then equates to doing a “good” or “bad” job. This can be especially difficult for children who are very driven and have high expectation of themselves or from their family. It can be equally worrying for children who are very perceptive and are aware of their parent’s fear that the hearing may have changed.

Parent emotions may suddenly manifest when the hearing decreases or they see their child struggling during testing. In these instances, children feel as if they are to blame for making parents upset. Simply acknowledging the tears of a parent can be helpful, rather than pretending it isn’t happening. Involving the child in the appointment is strongly encouraged.

We are in this together, and though the balancing act can be challenging, the ultimate goal is to provide the best information in a caring way, to each family.