? #: Echoes of Experience: Supporting Families with Cochlear Implants

Dr. Kate Gfeller on Supporting Families After a Hearing Loss Diagnosis and Music with Cochlear Implants

Christine interviews Dr. Kate Gfeller about what it means for families when a child is diagnosed with hearing loss, emphasizing that testing and diagnosis can be tricky, hearing loss may be unstable, and children’s development varies widely so “one size does not fit all.” She describes the emotional, social, and practical burdens on parents who must navigate variable professional guidance, limited incidental learning for the child, and the challenge of finding accurate information and supportive communities. Gfeller notes cochlear implant users often benefit from connecting with other users and mentions a free informational website. The host shares how conventions and programs with panels of implanted kids helped her. Gfeller also discusses music: cochlear implants transmit music poorly, but rhythm can be accessible, listening can improve skills, and interested kids should be supported by specialized teachers or music therapists.

00:00 Welcome and Guest Intro

01:30 Diagnosis and Testing Challenges

02:51 Emotional and Social Burden

04:14 Support Groups and Resources

05:41 Finding Community Through Events

06:23 Kids First Care Model

07:47 Music and Cochlear Implants

09:14 Let Kids Explore Interests

09:43 Closing Thanks

Transcript

Christine Ko: [00:00:00] Welcome back to The Girl Doc Survival Guide. Today, I'm pleased to be with Dr. Kate Gfeller, who, if you would like to hear a more extensive introduction to her, please listen back to episode 226, where she talks about her identity as a PhD researcher who grew up on a farm in Iowa with less than 150 people in her town. She has extensive experience with research on the influence of music on hearing aid and cochlear implant users. I remember back when my son was first diagnosed with auditory neuropathy, a bit late at almost age two. Dr. Gfeller's comments do echo some of our lived experience, and I wanted to put this out there because it can feel lonely when you don't [00:01:00] have a good community or support system set up yet when you first get a diagnosis of any kind. So here's our conversation:

You have experience talking to individuals who have lived experience with hearing aids and cochlear implants, as well as family members. Can you talk about what it can mean for a parent or family to have a child who is diagnosed with hearing loss ?

Kate Gfeller: When a child is born with a hearing loss, first of all, testing is really tricky. It's not as straightforward as people would like to think it is. The other thing is sometimes a child may have a non-stable hearing loss, and that's really tricky if it changes from one day to the next or whatever. Or, children get lots and lots of ear infections and things like that, so it can also be that things appear to be going along nicely, and then suddenly this child has a hearing loss. And [00:02:00] children's development varies such a lot. So, first of all, just even getting the testing done can be tricky. Then if it's discovered to be the case, there's so much variability that one size does not fit all. Families are trying to get answers, and they're trying to figure out what to do, how to be good parents, and they're at the mercy of the particular audiologist they work with. I know a lot of great audiologists, but I know some weren't so good either. In every profession there are better ones and not so great ones. There are some who I would also say are very dedicated, but they're really strict that this is the only way to do things. And that may actually be a perfect fit for child A, but not for child B, or for family C, but not for family D. So then you've got that aspect. Then I would also say that there can be a sense of sorrow and loss because a significant hearing loss has a profound [00:03:00] effect on how things happen because, for example, things like reading, it's input in first and then the child learns to read. Input first and then the child learns to speak. And so if that's blocked, that's really hard. Also, a child with a hearing loss doesn't get incidental learning like other children do, so they don't get all of that access to vocabulary and things like that. And so suddenly you have parents who are, I think, in a bit of a bind of wanting to be mommy and daddy, and now they're also having to become deaf ed teacher or speech language pathologist, and what's the right thing to do? And there isn't a right thing to do because there's so much difference. So I think there's a tremendous amount of emotional burden, social burden, and finding good answers is really hard. And then also work, and other kids, and other responsibilities, and they're trying to just have a [00:04:00] normal life. So figuring out how you're gonna live is tricky. I would also say that because you can't necessarily see it, other people may not understand why the kid isn't responding. There are all these things that are involved.

But one of the things I would also say is from having conversations with individuals with hearing loss or families, it's been very helpful for me to hear some of the things that help them to negotiate their situations. For people who use cochlear implants, one of the things that's really hard is being patient while their brain starts to acclimatize to the signal. And for a parent with their child waiting for your kid to get it is really hard. If you aren't in a community where there are a lot of people who have that situation, you don't have many people to talk to. It's kinda hard to find a good support group or a good advocacy group that's a good fit for you. So there are all sorts of psychosocial aspects that our healthcare [00:05:00] system doesn't take into account. Even finding the information is hard. So we've set up a website that's free and accessible for people to read. We have pages for family, pages for audiologists, et cetera.

But one of the things that many of the cochlear implant recipients told me is they feel like they get more helpful information from other CI users than they do from their audiologists. And so one of my jobs has been helping people to link up. That's one of the things that I think I can help with. I don't have all the answers. But I think I can help them to find information or contacts that might be helpful for them. 

Christine Ko: I think that's true. When my son first got cochlear implants, we weren't really part of a community and didn't really have a support group. I didn't really know how to find one. But we went to a couple cochlear implant conventions and we went to John Tracy Clinic to a summer program. One of the things that [00:06:00] was the most helpful to me was seeing kids at the cochlear implant convention that we went to as well as at John Tracy Clinic. Both those places had a panel of kids of varying ages who had cochlear implants. And it was just interesting and helpful to hear their experiences, navigating the world just as any other kid needs to do. 

Kate Gfeller: Yeah. In fact, I remember I was asked to give a talk at the Children's Hospital at the University of Washington in Seattle. They have this wonderful program where they have all sorts of programs for parents, and they offer them free. They're very family-oriented. I gave my talks, then at the end of the day they had a panel of teenagers who had cochlear implants, who also one played the cello, one played the violin, one played the piano. They were talking about their lives, and they talked about the music they loved, and they talked about hip hop and stuff. They were cool kids, and you could see that this program [00:07:00] was so oriented toward the fact that this is a life of these families, and that they're going forth each day with all these different decisions to be made. They really supported these families, and they also saw these kids as kids. They saw them as kids first. And the surgeon who did the cochlear implants, she knew those kids, and she knew them as kids. I'd hear her talking to them. She knew about their soccer games. She knew about what they were doing. She really knew them as people. And I don't think you get that everywhere. You're lucky if you get that. So if you don't have it in your own center, then you look for other things. It's just that when you're really scared and starting out, it would be nice if it were easier to find those things. 

Christine Ko: Yeah. Yeah, for sure. Is there something that you wish everyone knew about music and hearing?

Kate Gfeller: Okay. First of all, cochlear implants are not particularly well-suited for transmitting music. However, most of the kids I've worked with actually [00:08:00] like some kind of music, maybe not all music, and they may not be as good at singing in tune or things like that, but rhythm and beat is really just as good for them as it is for kids with typical hearing. And if you think about it, hip hop, that's what it is. It's beat. Music, it's a very difficult signal to listen to, and a number of the young people I have interviewed have told me that it was socially so important, and they did it with their friends, but it gave them a much more challenging signal to listen to, and they felt it helped them to be better listeners. That it really tuned their ears, and it tuned their brain. And so they started being able to hear things and really listen to small, subtle changes, among other things, like hearing things like affective prosody, like people's emotional feelings in their voice and things like that. Listening to music with their friends really made them better [00:09:00] listeners; it really challenged their brain. They also said, you can like music on a variety of levels. What you like is what you like. And so sometimes it's easier than having to listen to speech where you're trying to figure out what's the right thing. And th- they like to do it with their friends. So I would say that it's the kinda thing where, if a kid's not into it, eh, you know. They might be into soccer. They might be into art. They might be into theater. They might be into computers. They might be into making models. But if they wanna try it, I'd say give 'em a chance, but try to find either a teacher or a music therapist who will really work with them and help them through the slings and arrows of dealing with a very difficult acoustical signal that is not well transmitted with a device.

Christine Ko: Thank you. Thank you so much. 

Kate Gfeller: Oh, it's been my pleasure. 

Christine Ko: I appreciate all your insights and everything. Thank you, Kate. 

Kate Gfeller: Thanks for including me on your podcast.