EP176: Beyond Sound: Owen's Story of Silence and Sound

Exploring Life with Cochlear Implants: A Conversation with Paul Bass and Owen Whang

In this episode of The Girl Doc Survival Guide, we have excerpts from Dateline New Haven, in which host Paul Bass interviews Christine and her son Owen Whang about their picture book, SOUND SWITCH WONDER. The book, inspired by Owen's experiences with cochlear implants, aims to fill a gap in children's literature by featuring a character with the implants living his daily life. Christine, a Professor of Dermatology and Pathology at Yale, discusses the challenges and decisions they faced during Owen's early diagnosis and treatment for auditory neuropathy. Owen shares his perspective on the book and the unique advantages and challenges of having cochlear implants. The episode also delves into the creative process behind the book and the importance of representation and diversity in children's literature.

00:00 Introduction to the Episode

00:21 Meet the Authors: Christine Ko and Owen Whang

00:51 The Inspiration Behind SOUND SWITCH WONDER

01:20 Creating a Children's Book

02:28 Understanding Cochlear Implants

04:57 The Decision and Its Impact

05:53 Owen's Experience with Cochlear Implants

07:57 Funny Moments and Final Thoughts

Transcript

Christine Ko: [00:00:00] Welcome back to The Girl Doc Survival Guide. Today, I'm excited to share an episode of Dateline New Haven, in which Paul Bass interviews my son, Owen, and me, about our picture book called SOUND SWITCH WONDER. If curious about that picture book and how it came about, please listen in. Thanks!

Paul Bass: Hello and welcome to Dateline New Haven. I'm your host, Paul Bass, inviting you to look behind the stories that make our community tick. We have here a mother and son team with a new book they've published called SOUND SWITCH WONDER. It's about a young boy who has cochlear implants, based on the experience of Owen Whang. Christine Ko and Owen Whang are the authors, mom and son. Welcome. Thanks for coming on.

Christine Ko: Thanks for having us.

Paul Bass: How did this book come about?

Owen Whang: To be honest, I didn't come up with the idea. It was my mom's idea, and she was just like, maybe we could write a [00:01:00] book to share your story with the world. And I was like, okay. She started writing it and would ask me if what she was writing about was accurate with what I experienced. I didn't think it would actually come to fruition, but it truly did.

Paul Bass: Did you talk about how the story would develop? 

Owen Whang: I definitely made edits where necessary, but she did the bulk of the writing for sure.

Paul Bass: How did you come to the decision to do it as a kid's book? 

Christine Ko: When Owen was in first and second grade, he was in a mixed age group class. His teacher, Chester Sharp, is an amazing teacher. He was very much an advocate of showing kids through fiction and picture books, the diversity that's in the world and celebrating all of our differences. I asked Chester, could we get a book or two of a character with cochlear implants? And he and I both looked, but there wasn't really a picture book where the main character has cochlear implants who's just [00:02:00] living their lives. That sort of planted the seed in my head that I wanted there to be a book like that. 

Paul Bass: When did you start writing it? 

Christine Ko: When Owen and I started this, he was eight. 

Paul Bass: Wow. 

Christine Ko: Yes. 

Paul Bass: And Owen, how'd you feel about it?

Owen Whang: At first, I was so young, I didn't think much of it. I just thought it was a book, but now that I've gotten older, I've understood like a true power of what books can do. Getting a look into what a person who has cochlear implants life is, I think, is really cool.

Paul Bass: Okay. You're a Professor of Dermatology and Pathology at Yale, and you wrote a book, Doctor Patient Connection: Using Psychology to Optimize Healthcare Interactions. Was that inspired by your experiences with Owen?

Christine Ko: Yeah, so Owen was misdiagnosed initially as having typical hearing, and I was told he's just a boy, in quotes, meaning that boys sometimes develop language slower, and that's normal, and there's nothing wrong with it. And so I was reassured by [00:03:00] the different medical providers that we would see. Basically I felt like they were telling me you're just an anxious mom who maybe is expecting their baby, toddler, to perform at some level that is unreasonable.

Paul Bass: Even when we were bringing up our kids, 30 something years ago, we didn't like this idea that you're supposed to have a certain number of words by a certain time.

Christine Ko: Absolutely, there is a true range of normal development.

Paul Bass: But then you got a situation like this where you can't be inside a baby's head and know the baby isn't hearing, right?

Christine Ko: Yes. Owen has something called auditory neuropathy, and it's actually a little bit of a mixed bag diagnosis, meaning there can be problems, medically, organically from the inner hair cells of the cochlea to the auditory nerve, to the brainstem. People can have different sort of medical reasons for auditory neuropathy. Hearing fluctuates. It's like radio or a podcast where sometimes there's static, and you can't hear, but then all of a [00:04:00] sudden the signal is better. So auditory neuropathy, it can be like that, up and down, or it can be profound deafness.

Paul Bass: How do you know whether cochlear implants or hearing aid will help them hear or not?

Christine Ko: Owen had an auditory brainstem response test, under anesthesia.

Paul Bass: And does that tell you that a cochlear implant can make a difference? 'cause that's a big deal.

Christine Ko: Cochlear implants... there's actually an implanted part in the cochlea. It sends electrical signals to the auditory nerve that are transmitted to the brain. Those signals are converted into sound. So it's completely different than a hearing aid, which actually just amplifies.

Paul Bass: In the US, as of a year ago, there were 118,000 adults and 65,000 children with CIs. Who can't benefit from that? Anyone who it wouldn't work for? 

Christine Ko: Most sensorineural deafness, where it is a problem with the cochlea, it will work. But if you are deaf due to, say, a brainstem problem, a cochlear implant won't work because the problem is further past the cochlea.

Paul Bass: So how did you feel? You're a doctor. You can have sophisticated [00:05:00] understanding of medical issues. You're a mom, you love your kid. What was it like during this whole process? Before you had an answer, and you didn't know what would work.

Christine Ko: It was a really difficult thing, and I've told Owen, several times. He can tell his side. But at the time there was a lot of controversy about cochlear implants, a parent choosing for a baby or toddler that can't choose to have that surgery. It was a very difficult situation because I didn't want to be choosing for Owen something that later he would feel was really the wrong choice. This is what parenting is, right? We make choices. 

Paul Bass: Is it for life? You haven't made it for life. 

Christine Ko: You do have them for life because the surgery, it's not reversible in the sense that you had a surgery. Your point is well taken. Owen can take them off, and then he is profoundly deaf, so it is his choice. 

Paul Bass: And I love that part of the book. Owen, when you hear that story, what does that feel like? I'm sure you've heard it plenty of times. Are you glad it was done? What does it feel like [00:06:00] in your heart when you hear about the decision your mother made?

Owen Whang: It's not even close. I'm so glad that my mom made that decision for me, 'cause where I am in my life, I can't even imagine not being able to hear.

Paul Bass: One part I found really interesting in the book was the character was talking about how he likes to take out his implant sometimes when it gets too much noise in the world. When did you discover that you have this power, and how did you figure out when you like to have it in or out? 

Owen Whang: I first discovered the power in first or second grade in the classroom. We were doing some work or something. It was like, it's too loud. And so I just took them off for a little bit. For me it's complete silence, pure silence. And it was really nice. Ever since then I just realized that if I ever need a break from the noise, I can take them off for like even a couple seconds. And I do feel like that really does reset me. I can just have that feeling that like I can just reset so the world's in my hands.

Paul Bass: What are some examples of when you do that? 

Owen Whang: Sometimes when my mom gets mad at me. I don't really wanna hear her.

Paul Bass: That's the classic story. I [00:07:00] can't hear you.

Owen Whang: Sometimes during a test, I'll just take them off so I can reset.

Paul Bass: For the whole test?

Owen Whang: Just minutes. Obviously it's quite in the exam room, but it's nice not even hearing papers rustling or pencils.

Paul Bass: Why put 'em back?

Owen Whang: Sometimes the teacher will say something about a question, so obviously I want to hear that.

Paul Bass: Another thing that came through in this book, the last part, the search of the character to define for other people what it's like. And you ended up in a pool. Is that what happened in real life?

Owen Whang: I don't think so. That was just my mom making a very creative decision.

Paul Bass: Is that the way it feels? 

Owen Whang: In my opinion, I don't think there's a true way to get complete silence the way I hear it. But there are definitely ways where you can just hear like very little at all, which I think the pool is one of the best ways.

Paul Bass: So what did you tell her when she showed you that scene? Did you say, I don't agree with you?

Owen Whang: I think I was like 11 , so I didn't truly understand what the book was going for.

Paul Bass: Now? 

Owen Whang: I would say it's a good ending, in my opinion.

Paul Bass: It's so much fun. I look forward to reading it with my grandkids. There's a second half to the book, the backstory. I [00:08:00] learned a lot from that too. Owen, you wrote about a Roger. I'd never heard of a Roger. Your teacher will wear a device so you can hear better. Who else wears a Roger besides your teacher? 

Owen Whang: Nobody really except my mom. If we're out at a loud restaurant, it's easier for me to hear.

Paul Bass: My favorite part was they forget to turn off the Roger and you hear teachers say bad words or flush the toilet. That's pretty funny. Do you tell the kids what their teachers are saying in private? 

Owen Whang: Sometimes I joke, oh, they're talking bad about you.

Paul Bass: Christine, you wrote, "Owen taught me that being deaf does not have to be a lack of or a can't. Deafness, the absence of sound, can be awesome." I got that from the book. I guess that's how you learn as a parent, your kids teach you. 

Christine Ko: Yes, definitely.

Paul Bass: It was just so nice chatting with you today. Thank you for coming in.