Play Podcast Download Podcast

Transcription:

Kathleen Colella, AuD, CCC-A (Host): You're listening to Amplified presented by Lurie Children's. Transcripts of this and all episodes can be found at luriechildrens.org/amplified. Humans are born with the ability to communicate in a way no other species even comes close to. It involves grammar, semantics, humor, slang, sarcasm. It can be spoken, signed, or written, yet it's so natural, we don't even think about it. Making friends, playing on a team, interviewing for jobs, conversing with colleagues, resolving conflicts and maintaining all forms of relationships hinge on good communication skills. My name is Katie Colella and I'm a pediatric audiologist at the Ann and Robert H. Lurie Children's Hospital of Chicago, formerly named Children's Memorial Hospital.

As a clinician, I diagnose and provide intervention for infants and children with hearing loss so they can communicate and connect with the people and the world around them, whether it be spoken language, sign language, or even a communication board, most infants and young children crave communicating with the world around them.

It's a large part of what drove me to this field. I have always been fascinated with the natural perseverance of humans to communicate. Fetuses as early as 25 weeks have been recorded responding to sound. And infants spent about a year of listening before uttering their first word. A whole year of listening to speech and laughter and crying and songs before they even produce their own piece of language. But what happens when that ability to learn language is compromised by congenital hearing loss? Welcome to Amplified. This is a story about communication, connection and love beyond adversity. Our heroine Catherine Radasevich, Katie for short was born in 1988 in Naperville, Illinois to parents, Rudy, a lawyer and Eileen a homemaker.

I have been fortunate to know Katie for a long time before she agreed to this podcast. And there are so many things I would love to tell you about her right away, but it's not my story to tell. So we begin our journey by listening to the first time I sat down with Katie, Rudy and Eileen.

Can you believe it's the 30 year anniversary of Katie's diagnosis?

Eileen Radasevich: I know, I, it's hard to put that in perspective. You're right. It's really crazy. 30 years Katie. It's 30 years right now.

Rudy Radasevich: You still have curly hair though. So, some things havent changed.

Eileen Radasevich: And the same great smile.

Kathleen Colella, AuD, CCC-A (Host): So tell me about the day she was diagnosed.

Eileen Radasevich: Well, there's, there was time leading up for that, to that, and that was something that we had been talking to Katie's pediatrician about prior to her second sister being born and, or her younger sister, Katie has two younger sisters now, but you know, there've been times where we suspected and, but she was so good at, at, still had her language, still that the pediatrician told us that she was just, you know, kind of in the lower range of the number of words, but still within normal. And, and then her sister, Julie was born and we were heading up the stairs for bedtime and bath time. And her dad Rudy had her on his shoulders and we started talking to her and she brought her whole body around and looked at his mouth and looked at his face and we both just said it at the same time, she's reading your lips. And that got us really, the fire lit and we went to Children's and they did a initial hearing screening in the booth and the audiologist was amazing. They nailed it almost to a tee what your loss was and, and then we went to the hospital shortly after that for the ABR and that day was it, you know, I hit, my memories are few and far between these days, but that day just sticks in my mind so strongly because it was so foreign for especially, well, it was foreign for me.

Katie was, you know, had a light sedation and our cute little curly haired, two and a half year old was they put electrodes on her and the, there was a computer screen, which, you know, 30 years ago felt like we were in this futuristic, setting and there in front of us, the audiologist showed us where you started to respond to sound.

And showed us where the norm would be. And here you were at 65 and up and above that, but mostly, both ears, were at 65 decibels. And, I had an out-of-body experience and I haven't had one since. I, I saw myself below me if I went up into the corner of the room, because it was just overwhelming. And I kept thinking, what does this mean for our sweet Katie?

Kathleen Colella, AuD, CCC-A (Host): This diagnosis was devastating. Clinically Katie's hearing loss would have been described as moderately severe to severe sensorineural hearing loss. Functionally, this meant Katie could only detect speech if someone was talking loudly, but she was consistently missing most speech cues and likely wasn't understanding much. As you can hear Rudy and Eileen have clear, articulate speaking voices, but that wasn't enough to provide the language input needed to develop typical speech and language skills. Without timely intervention Katie was at risk for a significant speech and language delay, and the impact of the hearing loss could be irreparable.

Eileen Radasevich: And from that point on Children's was just amazing. They fitted you with aids and we got in, but we got in the car that day. And, you were still, you were asleep in the car seat and we were driving back home and I said to your dad, I was like, how does this work? How are we going to do this? And he said, I don't know, but we're going to figure it out. And you sure helped us figure it out.

Kathleen Colella, AuD, CCC-A (Host): Rudy, what was it like for you learning about the diagnosis?

Rudy Radasevich: Back 30 years ago, there wasn't the internet where you could jump online and learn things quickly. So the ignorance that we walked into that room with was profound. And you don't know anything, you don't know anything about adaptive services, you don't know anything about support. You don't know anything about hearing aids, except that's what old people wear. So and it wasn't like Katie was unresponsive when she was younger, you know, she would ignore us at times.

So we thought she was just ignoring us because when we raise our voice and barked a little bit, she'd turn around and respond, not realizing that she wasn't able to hear us. And you would back at the time, I would think back over the previous two years and think, oh my God, this wasn't like she was ignoring us. She just couldn't hear us. And that was, not devastating, but heartbreaking in a sense, because you want to do everything for your kid that you can. And when you're, we would always tell her as she was growing up, you know, you don't know what you're not hearing, if you're not hearing it. And the same thing for us, we didn't know that she wasn't hearing because we didn't know she wasn't hearing, but, we were fairly dedicated to doing whatever it was we needed to do to educate ourselves and help our daughter.

Kathleen Colella, AuD, CCC-A (Host): And I give you a lot of credit for pushing forward with the hearing test, even though it sounds like the pediatrician didn't align with your concerns because there's now research that shows that parent concern is actually a high percentage of children, diagnosing a child with hearing loss, especially one who passed the newborn hearing screen.

And now, you know, this is a case where the newborn hearing screening wasn't even around yet. So good for you for going with your gut. And I think a lot of parents need to know that's sometimes what they need to do if there's a concern.

Eileen Radasevich: Absolutely. And we also, you know, she was, exposed to a lot of family and close friends who not a single, whenever we would discuss it prior to the diagnosis to a hundred percent said, oh she's fine.

Kathleen Colella, AuD, CCC-A (Host): Even after you told them about the diagnosis?

Eileen Radasevich: No.

Rudy Radasevich: Her grandmother, her grandmother blamed it on hot dogs eating too many.

Kathleen Colella, AuD, CCC-A (Host): There's definitely no link to support that.

There is

Eileen Radasevich: a story there. That was that same day too. It was a, that was a very emotional day. So we, we our, our appointment at, at the hospital was, after lunch. And we were driving in from Naperville. We had a long time, so we were, we were depriving her of her nap. And, I was, we had a like two month old. My mom came over and was holding her sister, Julie in her arms, we were in the kitchen. And,Katie was in her high chair and I was giving her lunch and normal lunch at that time. Katie just loved hotdogs. And so, she was having her lunch hotdog and my mom, is this, very, she was ahead of her time and everything needed to be like organic and, and, and, whole type foods.

And it was just totally upsetting to her to see that she was eating a hot dog. And, she knew that Katie ate them all the time. And so I said to her, well, you know, she kept saying to me, I think she's gonna, you're going to find out she's fine. She's fine. And finally, my mom said, because she was very concerned also. I know. And she said, well, if I ate hot dogs every day, I probably couldn't hear either.

Kathleen Colella, AuD, CCC-A (Host): Oh no, no, no, no.

Eileen Radasevich: And so it was just very fortunate, a number of things because my mom is still alive now. And, and she lived through that day because she was holding our infant and there was, there was physically a table between us because I actually thought about lunging at her, you know? And, but, -

Rudy Radasevich: Instead she said, mom, trust me if it's the hot dog, she'll never have another hot dog.

Eileen Radasevich: I said, well, we're going to ask the doctor. He did. I just took a deep breath and said, we'll ask the doctor.

Kathleen Colella, AuD, CCC-A (Host): Well, good for you. You took the high road. Okay. So Katie is diagnosed and then in a matter of weeks, she gets hearing aides. So, what was it like all of a sudden coming home with all this new equipment and getting used to that?

Rudy Radasevich: We were fortunate. I think that Katie adapted to her hearing aides very well. I remember the first day she came home with our hearing aide where her hearing aides went into the kitchen and heard the dishwasher for the first time. Said what's that. And then would hear other sounds and go what's that, what's that. So she liked her hearing aides because she could hear. We never had a problem with her wanting to yank her hearing aides out, not liking her hearing aides. One of the little signs I have in my office that I got from her when she was in preschool, they asked, what you can do.

And the teacher would write it down. One thing I, I like to go to the park. I can, I can color. I can jump rope. I can hear better with my hearing aides. And I keep that in my office for 30 years. It's like, oh my God, that's, that's exactly right. So it's a lot. And I developed my, I should have patented this, a little device to keep her hearing aides so we wouldn't lose them, I took some fine fishing line and tied them to the stem of the, of the hearing aide and then put them to a clip in the back of her shirt. So she would never lose her hearing aides. And she besides one lake accident, never lost the hearing aide. And since they're not covered by insurance, that was a good thing.

Kathleen Colella, AuD, CCC-A (Host): And I, I remember you telling me about how you used the piano to help her get used to her hearing aides as well.

Rudy Radasevich: Yeah, we, we, we bought a piano. I bought, we bought a piano and, the reason was it was a birthday for Eileen. Eileen played the piano as a kid and I thought, Hmm, piano. That would be a good thing for Katie to help her discriminate sound. So we bought a piano, she took piano lessons. Got the point where when her middle sister was doing a talent show thing in middle school singing, cause she has a very nice voice, Katie was playing the piano as a, as an accompanist. And I think the piano really helped and she took piano lessons, liked taking piano lessons. And you know, when you hit the wrong note with a piano, it's still a note. So it's not as bad as playing the trumpet.

Kathleen Colella, AuD, CCC-A (Host): I cannot stress enough how progressive this was for the nineties. Research about the benefits of music therapy for individuals with hearing loss was in its infancy at that time today, music therapy has been shown to improve speech perception, abilities for those with hearing loss. And Katie, you were, you were so young at the time when you got hearing aides two and a half, but do you have any memories of when you first got your hearing aides?

Katie Radesevich: So from when I first got my hearing aides, no. Um, but one of my earliest memories that I do have is the first time that I mastered putting my hearing aides in by myself. Um, and I remember I was standing in front of my dresser mirror, just, you know, just trying to jam these ear molds in like I had everything in place and when I finally did it, I ran downstairs. Um, and you know, it was just kind of an aha moment. And like, that was so cool for me because that was, you know, kind of the start of that independent journey with hearing aides too. Um, and yeah, I definitely remember that. And you were making dinner and I had just ran downstairs and Mom, I did it. And, um, that was a really cool moment.

Kathleen Colella, AuD, CCC-A (Host): Before Katie was diagnosed with hearing loss, did you ever know a child with hearing loss?

Rudy Radasevich: No.

Eileen Radasevich: We did not.

Kathleen Colella, AuD, CCC-A (Host): And now did, did it surprise you to learn how common it is?

Eileen Radasevich: Somewhat, but we still, I'll tell you. I didn't still, I did not find it common, um, in our, in our world where we lived, but coming to the hospital and coming to the clinics. Absolutely. Absolutely. And it did feel so much you know, like this was not as rare as it felt to us.

Rudy Radasevich: And then it turned out that another, um, little girl in Katie's grade at her, uh, elementary school, um, was hearing impaired and wore hearing aides and lived one cul-de-sac away. So that was, provided a bit of a frame of reference, because again, back then, 25 years ago, there was no internet. So you don't have the ability to try to go in a child's voice or anything else and try to find out information. Um, it was much more difficult to develop it on her own. She had some good audiologists along the way that were very helpful. Um, but it was still, you were kind of on your own back then.

Kathleen Colella, AuD, CCC-A (Host): Sure. Now that you're, you're so well educated on the resources that are out there now, what if you could pick one that's available today, do you wish you had back in 1991?

Eileen Radasevich: Just the internet I think just the, um, being able to, you know, spend some time and educate ourselves.

Rudy Radasevich: Yeah. I think there's a lot of programs that Katie got involved in. I love Sound Experience that, um, Lurie puts on for kids. I think it's a terrific thing for the kids, for family, for siblings, um, different programs that I'm involved in because of some of the things that I do, um, supportive of Katie and also supporting of the here, uh, of, uh, hearing impaired environment of kids.

There are, you know, music therapies and other things that are available now, which weren't available then, which I think are great things for kids where hearing Impaired kids are around other hearing impaired kids. So there's some commonality there. I'm not the only one, it's very isolating. I think to think you're the only one.

Eileen Radasevich: But I think, uh, when I reflect back to what you, your question. Just newborn hearing screening. That's what I wish had existed at the time of, um, when Katie was born so that we would have known earlier.

Kathleen Colella, AuD, CCC-A (Host): I'm here with Dr. Joy Ringer, who is the Clinical Coordinator of the Diagnostic Audiology Team at Lurie Children's. Joy, thank you for listening with me today.

Dr. Joy Ringer: Thanks for having me on.

Kathleen Colella, AuD, CCC-A (Host): One of the first things I want to ask is for clarification between the different types of testing that Eileen discussed. Uh, she talked about Katie going in a booth, and then she talked about Katie being sedated. Can you explain those differences?

Dr. Joy Ringer: Sure. So in the booth, what we call behavioral testing includes about four or five different tests. Some of them are objective, so the kids don't have to do anything, but sit there and be still, which is a tall order for, for a lot of kids, but, um, younger kids. Um, so we first check to see whether or not we think there could be any sign of fluid or, or, um, ear infections. And then we go on to do further testing that tests specifically the cochlea or the organ of hearing. And those are tests that either there's a response or there isn't a response. And really the kids aren't, aren't showing us what they hear.

And then we go on to do a test where we watch them respond to sounds. So it may be a situation where a young child is turning their head when they hear a sound out of a speaker and we light up a toy and teach them whenever they hear the sound, they get to see the toy and, um, or for an older child, it might be holding a peg and putting it in when they hear the beeping sound. So then we're, we're literally watching them react to the sound and, um, if that's not successful and we can't get enough information to rule out hearing loss, then we do something called an auditory brainstem response or ABR evaluation.

And that's an evaluation where they have to be placed under the kids have to be placed under general anesthesia. And not because it hurts or anything like that, but any muscle movement, even eye movement will interfere with the test. So, um, the kids are under general anesthesia. We put sticker electrodes on their forehead and ear lobes and, uh, uh, sound inso it gives us information about both ears and we follow that response from the ear all the way up the brainstem. And, um, it will tell us um, if there is in fact a hearing loss, or if there's any issue with the sound traveling from the ear up the brainstem. So it gives us good, good information again, without the child having to show us how they hear, um, it just, we monitor those brainwaves, find out whether or not that sound is the, if the auditory mechanism is working as it should. It does not tell us how they understand the sound, but it does tell us if the ear is working properly.

Kathleen Colella, AuD, CCC-A (Host): And I think it's just nice to have a starting point for hearing aides.

Dr. Joy Ringer: Absolutely. It gives us some great information for us to be able to program and set hearing aides. It also can tell us whether or not there's a hearing loss because of fluid behind the eardrums or if it's a, um, a permanent, you know, sensory neural or, um, takes place in that, the cochlea, the organ of hearing. So it gives us a lot of good information.

Kathleen Colella, AuD, CCC-A (Host): Okay. And Katie and, um, Eileen, they talked about the newborn hearing screening, which Katie missed, uh, born in 88. She didn't have it. Didn't come around until the nineties , didnt become more become more standard until the nineties. Can you share from your experience, how the newborn hearing screening affected the age of diagnosis?

Dr. Joy Ringer: It was huge. Um, you know, I've been doing, I've been a pediatric audiologist for over 35 years. So if you think back in the eighties, mid eighties, when I started there wasn't newborn hearing screening, of course.And so kids were identified with hearing loss closer to 18 months to two and a half years of age when their speech and language was delayed. And parents started to really wonder, you know, what's going on. And so, uh, we lost a lot of great years for language development and amplification of course at that time was, you know, hearing aides were not as good as well and not as easily programmed. So, um, you know, kids were at a, at a disadvantage on several different levels. Um, now we can identify hearing loss that's very, very mild that can also impact hearing loss. And, um, and we're also able to tell if there's any kind of um neurologic issues going on, um, which would change a course of, um, treatment for a child if they have hearing loss or there's other issues going on. So it made a very big impact.

Kathleen Colella, AuD, CCC-A (Host): Okay. And I feel this, this field I'm always humbled by how much, the general public doesn't understand about hearing about that sense in general? You know, I think, and I, I forget of how much I've learned just being in this field. Um, so when a family hears that diagnosis of hearing loss and understandably says, but my child does hear me. They do turn sometimes, they do have some words or make some sounds. Where are some of the best places you recommend to get information or resources?

Dr. Joy Ringer: I definitely love to have parents talk to other parents. So there are local groups that are out there. There's also AG Bell. Hands and Voices as an organization that, um, is national each, each state has their own chapter. Uh, so I think that's really great. There are lots and lots of different kinds of resources out there that you can find on the internet, but you can also go down this dark hole. Right. And there are a lot of opinions flying out there. So I think it's really great for parents to connect with other parents who have are in their shoes, have been in their shoes.

So Lurie Children's has, um, a group that called Parent-Wise where we can connect families with one another. There's also Sound Experience, which is a parent support group. And it's for kids who are hard of hearing who have, um, no necessarily met other kids with hearing loss in their school district or in their neighborhood.

And it's a way for parents and kids and siblings to connect, uh, and has great advice. Parents are giving good advice at those meetings. And then there's also through Hands and Voices, uh, there is Guide By Your Side, which is another parent resource. So I think those are the good places to start.

Kathleen Colella, AuD, CCC-A (Host): So you've seen thousands of ear molds probably at this point.

Dr. Joy Ringer: Probably.

Kathleen Colella, AuD, CCC-A (Host): Um, what's your favorite style or a design someone ever did?

Dr. Joy Ringer: Oh my goodness. I've seen every athletic team you can think of, um, if it's the Bears or the, or Green Bay. I've seen a lot of camo, I've seen a lot of Frozen. Um, I just think it's so wonderful when the kids are creative and sometimes, you know, they pick colors that are not necessarily what a fashionista would put together, but if they're happy with it, that's fantastic. And I love it when parents are like, okay.

Kathleen Colella, AuD, CCC-A (Host): I know I give them so much credit. I, I can see them thinking about like their picture days coming up or the holidays, or like, oh, that's going to be in all those pictures.

Dr. Joy Ringer: Exactly, exactly. And I've had some kids get, like, if they were going to be a flower girl or whatever, they'll get special ear molds for that. And, um, and I, I, it's a real way for them to be creative. And what I love when, when parents are a, you know, feel comfortable to let them do that. There's so little that kids have control over, right.

Especially a kid with hearing loss, and it's a way for them to take control of something that they, you know, need to wear, have to wear and are excited about. So I love hearing what they want to put together.

Kathleen Colella, AuD, CCC-A (Host): Finally, can we put on the record, do hot dogs cause hearing loss?

Dr. Joy Ringer: I can honestly say and with great conviction, hot dogs do not cause hearing loss. So, you know, I'm, I'm hot dog at Wrigley field tastes the best anywhere you go. So, uh, but especially at, at Wrigley field, so I'm pro hot dog.

Kathleen Colella, AuD, CCC-A (Host): Or Guaranteed Rate, depending on where you go.

Dr. Joy Ringer: That's true.

Kathleen Colella, AuD, CCC-A (Host): As long as it's just mustard, right?

Dr. Joy Ringer: Yes. Mustard and onion, no ketchup.

Kathleen Colella, AuD, CCC-A (Host): No ketchup.

Dr. Joy Ringer: No ketchup.

Kathleen Colella, AuD, CCC-A (Host): Receiving hearing aides might sound like the end of the story, but it was just the beginning more on the next episode of Amplified. Thanks for listening. Amplified presented by Lurie Children's was created by me, Katie Colella. Music by Les FM, artwork by Katrina Graviolo. Special thanks to Jamie Budzig, Lisa Weber, Joy Ringer, Jen Haney, Danielle Lee.

And of course the Radasevich and Farnsworth families. If you need resources regarding childhood hearing loss, go to Luriechildren's.org/audiologyresources. Transcripts of all episodes are available at Luriechildren's.org/amplified. Learn more about Katie and the incredible division of rehabilitation services on Instagram @ Lurie Rehab Services.

That's @ L-U-R-I-E Rehab Services.