Breaking the News

Late Onset or Progressive Hearing Loss

By Jennifer Kolb, Au.D, Children’s Hospital Colorado

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 most 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 knowing 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 difficulties a child may be having. The sense of urgency to move quickly with technologies (hearing aids, cochlear implants, or FM systems), and playing catch up with services (early intervention or school supports) may distract from any difficult feelings parents (or kids themselves) are going through. This change in the plans, 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 “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 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 implant candidacy. All of those changes represent a huge learning curve in a short time for both parents and child.  It isn’t 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 to 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 also be overlooked in a appointments filled with updating the history, checking in on school or therapy, testing hearing and equipment, and keeping a child happy and included. Parents may dread audiology appointments due to a 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.

Older Children and Sharing the News

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 a 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 expectations of themselves or from their family. It can be equally worrying for children who are very perceptive and are aware of their parents’ fear that the hearing may have changed. Regardless of the outcomes of the hearing test, it is always important to acknowledge when children are doing their best in the sound booth. Conversely, it is important not to confuse parents or kids by saying “It was a good test today.” If a child did “very well” on the hearing test, we likely mean that we knew they were listening as well as they could and trying hard, and we should say just that. Parents, particularly those new to the audiology world, might hear “good test” and think their child suddenly had more useable hearing.

Although audiologists may be full of empathy for their patients and parents in light of a new or progressive hearing loss, they are also seeking a balance in ensuring that parents are receiving the right information at the right time. This can be so difficult, even for a seasoned pediatric audiologist. Many times, I’ve seen children watch their parents become upset about a progression of a hearing loss, unexpected or not. Sometimes tears even surprise the parents, as grief that may have been pushed aside while the pursuit of technologies and therapies took precedence. Emotions may suddenly manifest when the hearing decreases or they see their child struggling during the testing in a way they hadn’t previously realized. In these instances, children may feel as if they are to blame for making their parents upset. Simply acknowledging the tears of a parent can be helpful, rather than pretending it isn’t happening as a child sits and wonders why a mom or dad is upset, or feels they may have somehow disappointed a parent. It may help to let the kids know that sometimes parents cry when they love their kids so much, but that the kids haven’t done anything wrong. We also don’t want children to imagine there is something dreadfully wrong. Many children may have never seen their mom or dad upset, and kids are likely to assume something much different than reality.

There is a saying which I frequently think about…there are three sides to every story – your side, my side, and the truth which lies somewhere in between. This comes into play when it comes to counseling a family regarding a change in hearing with a child who is old enough to understand. As an example, consider a child with a hearing loss identified in elementary school and fit with amplification. The newly diagnosed hearing loss is still very shocking and new for the family, who are scrambling to ensure that they are doing everything for their child. Parents are grieving and have expressed feeling guilty for the late identification of the hearing loss. The grief is so present that an audiologist may choose to send the child out of the room sometime during the appointment when counseling the parents to shield them from seeing their parent upset. However, this may leave the burden on the parents to explain the hearing loss to the child, and they may not have enough understanding or energy to fully answer or explain. So there can be multiple factors that affect counseling decisions, and again, with the best of intentions, it may still be a challenge to meet the needs of everyone in the appointment. Parents are encouraged to let the audiologist know if they would like a child in or out of the room, or if they would like help in discussing changes in the hearing loss.

Involving the child in the appointments is strongly encouraged, without making any assumptions that they are too young or can’t understand. Taking the time to describe the audiogram directly with the child can help to empower them and make them feel more a part of the process, rather than just the test taker who provides “good” or “bad” results. As an example, I have a friend whose hearing loss was present since early childhood. However, it wasn’t until college, when she visited an audiologist on her own, that she understood her own hearing loss. This seems contradictory to our efforts to promote advocacy and self-awareness or expecting children to learn to take care of their own equipment. Seeking a child’s engagement in the process outside of just “test-taking” sets the stage for growing independence and may even provide some talking points for the family.

Additionally, I’d also encourage allowing children to observe their cochlear implant mapping or hearing aid programming if they are interested. Often, I have children pull up a chair so that they can see what is happening on the screen. Again, this allows them to be an active participant and to ask questions, rather than sitting passively while things are done to them or for them.

Along the lines of children being “tested” or “judged,” seeing the audiologist taking a lot of notes during a visit can bother a child.  Acknowledging the notes and explaining what they are for can bring a sense of relief to a child, or even a parent. I often explain that I’m taking notes so that I don’t forget to order a piece of equipment, or so that we don’t have to repeat testing if the computer has an issue. Children appreciate knowing what this is about instead of assuming that we are writing down the good or the bad about them.

Reading Between the Lines

The challenges of balancing the news regarding a diagnosis or progress with grief, technological options, plans for school and/or therapy, and providing empathy and support to a parent are real. And what you see isn’t always what you get, meaning, there may be more under the surface which isn’t always apparent, like grief, guilt or fear. Audiologists, though trying to provide the best information, sometimes may misread a situation and a parent may leave feeling frustrated or disappointed, despite addressing what seemed to be most urgent, relevant or important. With a late onset hearing loss, I have seen parents express their guilt for “dropping the ball” or misreading the signs of a hearing loss, or having guilt for being frustrated with their child for “not paying attention.” This is a layer of complexity that isn’t present when identifying a hearing loss in an infant. It takes vigilance and strong communication between the audiologist and parent to ensure that questions are being answered, not just about the hearing loss, but also for the other issues that accompany it.

Audiologists generally do strive to provide compassionate and thorough care for families and children who have a hearing loss. However, we also value feedback from parents and ongoing communication from families to make the appointments as successful as possible. Each family is different and their preferences for receiving information are different. Sometimes there is success in “reading the room,” or reading how a parent is ready to receive information. But there may be times when we miss the mark. As a pediatric audiologist, I would urge parents to communicate with the audiologist if something isn’t going as expected or hoped during an appointment, or if they need help in discussing things with their child. We’re 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.