Our second Child’s Voice Podcast was released on September 12, 2018. To listen to the podcast, please Click Here.
On today’s episode of All Ears at Child’s Voice: A Hearing Loss Podcast, Tatum and Jessica interviewed Dawn and Megan on the topic of cochlear implants. Here are some of the takeaways:
- Recommendation for a cochlear implant takes time and input from a variety of people, including:
- Early intervention therapists
- We talk about each step of the process in this episode. The process includes:
- Audiological testing
- Hearing aid trial
- Imaging studies (MRI/CT)
- Insurance approval
- Surgery (one day!)
- Time for healing (2-4 weeks)
- Activation of processor (one to two appointments, can take about 3 hours each)
- Mapping (can take months)
- Time for learning to listen!
- Take Home Message: Cochlear implants are amazing devices!! They bring access to sound and through access to sound they bring speech and language development! But it is most definitely a process and each part of the process takes time.
Where to find Dawn and Megan: DVioletto@childsvoice.org MWernsman@childsvoice.org
Where to find us:
Tatum (T): Welcome to Episode 2 of All Ears at Child’s Voice: a podcast discussing all things hearing loss. We aim to connect parents of children with hearing loss and the professionals who serve them. We’re your hosts. I’m Tatum Fritz,
Jessica (J): And I’m Jessica Brock. Today is the first episode of a two-episode series about the cochlear implant process. We will be talking today with two audiologists. Next week we will talk with parents about the process. We have fellow colleagues, Dr. Dawn Violetto and Dr. Megan Wernsman today. Welcome Megan and Dawn.
Dawn (D): Hello!
Megan (M): Hello!
J: Dawn is the Director of Audiology at Child’s Voice and Megan works as a pediatric audiologist here at Child’s Voice. Megan and Dawn, would you like to share some about your role here at Child’s Voice?
D: I’m Dr. Dawn Violetto. As Jessica said I’m the Director of Audiology at Child’s Voice and I have lots of jobs here at Child’s Voice, part of which is taking care of the children in the school and the early intervention program and then we also see patients from the outside for hearing testing and device support and then we also see babies from newborn hearing screening referrals that need diagnostic testing. So we’re very busy here in the audiology department most of the time!
J: Megan, do you want to share?
M: Everything that Dawn just said I’m a part of and then the only thing that differs for me is I go to Chicago once a month and see the families that are in the toddler group in the Chicago location and just kind of help them out, answer questions, check devices, things like that.
T: That’s the once I month that I get to see Megan and it’s always nice and we always have lunch at our toddler group table since we don’t have a real table in Chicago (laughs).
J: It’s one of the low, children’s tables with the cube chairs.
T: Yes, not the most comfortable but…
J: Yeah, awesome! So today we will be talking with Megan and Dawn about their experience counseling families through the cochlear implant process. But before we dive into today’s topic of discussion, Megan and Dawn, do either of you have any favorite work stories that you’d like to share from the past week?
D: Well this is the last week of summer school, so this is the week that our recent graduates– it’s the last time they’ll be in the building, so, I think this week is always happy and sad because we’ve seen a lot of these children– and I’ve seen a lot of these children, for the last seven years, come from early intervention all the way up to graduating. I’ve seen them come in with no language and then I’ve seen them walking out the door not stopping talking. So that’s kind of what I’m seeing this week and thinking in my mind and observing how great it is that these kids have achieved what they have in such a short period of time, and they’re on their way back to mainstream and are doing great.
J: It’s a bittersweet moment it sounds like!
D: It is!
J: Megan do you have any cute stories from this week?
M: Well I am pregnant and my belly has popped all of a sudden and so I feel like every time I walk past kiddos this week especially, they’ve been like, “There’s a baby in there!” and, “What are you feeding your baby?” I get a lot of interesting questions over the past week, week and a half, just because everyone is kind of noticing that.
J: That’s really funny!
M: Which is fun and starts up some interesting conversation.
J: I didn’t even think about that, “What are you feeding your baby?” — that’s really funny.
T: Yeah that is a really fun question!
J: Well awesome, should we jump into our main discussion now?
T: Sure, to start, why don’t we describe for our listeners who may not know what a cochlear implant is, so, Dawn, Megan…?
M: Sure! So a cochlear implant just to kind of put it simply is a device for children with severe enough hearing loss where hearing aids aren’t helping them and it kind of just replaces a part in the inner ear that’s not functioning like it should and provides that electrical stimulation to the nerve and then the nerve sends that signal to the brain. The cochlear implant has both an internal component, which is implanted, which is why it’s called a cochlear implant, and then an external component which is the external processor that picks up the sound.
J: Cool, that was a much better definition than I give, I feel like I ramble on and on but yours was very succinct.
T: Yes more succinct, I have to go through: this is the outer ear and then the cochlea which is where the word comes from, but that’s a great way to put it!
J: Okay so you kind of already mentioned this, but talk to us a little more about who benefits from a cochlear implant.
M: Children or adults who have hearing loss, a certain type of hearing loss. So if you have a hearing loss that’s involved—you kind of brought up the outer or the middle ear—this device isn’t for those patients that have hearing loss where there’s middle ear involvement. But if there’s damage to the cochlea and it’s severe enough where hearing aids aren’t appropriate for them, they’re not providing appropriate amplification and they’re not getting access to speech and developing speech and language like they should, then a cochlear implant can provide enough stimulation to give them access. Does that answer the question?
T: Yes! Yes I heard you mention children and adults. How early could a family start considering a cochlear implant?
M: Really because a part of our role here at Child’s Voice is to see those babies after they haven’t passed their newborn hearing screening in the hospital, we kind of bring that up pretty early. Definitely we want to make sure that they’re not getting benefit from hearing aids, but if we don’t get any response on an Auditory Brainstem Response test then that’s kind of our next step to just mention a cochlear implant, but of course to fit hearing aids to see if they get benefit from hearing aids. So you can start that conversation as early as they’re diagnosed if the hearing loss is severe enough, but really the conversation for most kiddos comes when we start to see that even with the hearing aid they’re not making the progress that they need to.
J: So the conversation can start pretty early but when are children allowed to become implanted?
D: So I think the earliest we’ve had a child implanted here is 8 months of age. So somewhere between 8 months and a year is typically what we’re seeing a lot of these profound hearing impaired children being implanted if it’s appropriate.
M: The biggest thing, no one wants to do surgery if hearing aids will work and so you really have to give hearing aids a try and make sure that the kiddo isn’t making good enough progress with the hearing aid to really—
D: acquire speech and language, I mean that’s the goal of the cochlear implant is, the parents’ goal is that the child acquires speech and language and has normal speech and language just like their hearing peers. That’s the point of getting a cochlear implant, so that’s why we have to make sure very carefully that they’re an appropriate candidate.
J: Definitely, definitely. So part of the process of determining whether or not they’re an appropriate candidate is getting reliable hearing tests through a variety of different means. What other steps are there? You’ve mentioned some of them, so the family comes in, they get a hearing test of some sort and then what?
D: So we do a variety of tests as part of the battery goes and it really depends on the age of the child and where their language is already, so we definitely have to do unaided testing to support the fact that they have severe to profound hearing loss and then we do aided testing to show this is how they’re hearing with their hearing aids in, in the best case scenario. There is a whole battery of things that the family has to go through, not necessarily at an audiology center, but it might be at the actual implant center. You know, they meet with the team over there where they have to have imaging studies done, CT and an MRI, to make sure that the structures of the ear are going to be able to receive a cochlear implant because some forms of hearing loss that’s not the case. Then they would no longer be appropriate. And then just basic health and history to make sure that there’s no other health issues that would preclude them from being anesthetized and going under surgery. It’s a process, it’s not a one-time shot, it’s definitely a process and it’s not just what we’re showing in the audiology booth, it’s also what therapists are showing in the home and their input as to whether the child is making appropriate development or not with their speech and language and listening skills.
J: Yeah so the recommendation doesn’t just come from you, it comes from…
D: It can come from, I would say, the team approach, so the actual referral to an implant center would come from us, but you know as far as input as to where this child is in their progress, that they’re a candidate, comes from a team.
M: There’s a lot of work that goes into determining that it’s appropriate for that child. Because we don’t want to do surgery if it’s not appropriate.
T: Yeah, I feel like with my families after they go through the candidacy process, another process that takes longer is the insurance process.
T: So how does insurance play a role in the cochlear implant process?
D: We all sigh! Well… unfortunately sometimes the insurance are the nay- and the yaysayers of it all. I feel like less so than before. You know, ten years ago there was a lot of “ooh it’s experimental kind of device” and I don’t think that’s the case. I don’t think they get that kind of pushback. We don’t deal on that end of it, so I can’t really give you firsthand, but through hearing from families we know, and through talking with the people at the hospital, that sometimes it is a process to go through.
M: And certain insurances set specific guidelines that need to be met in order for them to pay for the surgery. So, some of those guidelines are what we’re using to see whether or not they fit the criteria to be a cochlear implant candidate and then you submit to the insurance company and like Dawn said they agree to it or they say no.
D: Nowadays it’s pretty rare that they’re not approved.
T: Yeah I know I’ve had to write letters to the insurance company on requests of the hospital for some of my kids. It most recently came up with a family that wanted to get the implants before 12 months of age. He ended up getting approved for one at 8 or – 9 or 10 months I guess and then the other one he could not start going through the insurance process until he was over 12 months.
D: It’s all about red tape and paperwork and money out of that company.
J: Jumping through hoops. So… there are many steps before a child gets a cochlear implant. But then what happens? So the family goes in for surgery and then what happens after that?
M: So typically the family waits anywhere from a couple of weeks to about a month for healing. And then they go in and see the surgeon again who just checks the incision site, makes sure that everything looks good, and they clear them for what’s called “activation.” Activation is the really exciting day where they come in and they bring their whole kit with their external processors and all of their goodies. And the external component, the processor, is turned on. We create what’s called the “map.” And it’s basically when– the internal device is called, well part of the internal device is called the electrode array and it has so many electrodes on there and you have to measure those electrodes and make sure that the internal component is working like it should and then setting up stimulation so that they can start to hear. That day can take a couple of hours. But then that whole process of fine tuning that can take months.
So it’s important to know that you’re not going in for that initial activation and coming out hearing perfectly. It’s definitely—cochlear implants bring a lot of hope to families and they should because they’re really amazing things but after that initial activation, these kiddos, even adults, aren’t going to be hearing like we would expect them to. Over a couple of months, oftentimes they’re up close to that normal range.
D: Yeah so they have to go back up for follow-up appointments and new maps are created based on where they’re hearing and then new maps are created again. So it is a process. You can’t just turn up the dial on hearing and be like “there ya go! See ya later in six months!” It has to be a very gradual process in building up the toleration to stimulation and sound.
J: Yeah because when we’re talking about babies being implanted, they haven’t heard any sound before typically or they’ve heard very very little. It would be like… I don’t know… going to a rock concert for the first time—you know? It would just be really shocking and we don’t want them to not want their cochlear implant on, right?
M: Exactly which is why we start a little bit more conservatively so we know that they have some access but it’s not optimal; it’s not where we want it to be. But we’re starting that process of giving them access to sound.
T: I know on our end, maybe as therapists, I’ve had the experience that a family wishes they were hearing more sooner at home. Usually in the pre-implantation process, we’re going through these six sounds, the Ling six sounds to see what they’re hearing and then a lot of my families are expecting day one—they’re gonna come to therapy and turn to all six sounds or they’re going to turn to every instrument that we play or every voice or their name right away. And so I know it’s very important on our end to explain how long the mapping process can take.
D: Not only the mapping process too but also the learning process. I mean even if a child gets activated at 12 months, very often you have to consider them as a newborn as far as hearing goes so they have to go through the process of learning what sound is and what it means. And they’re not gonna turn to their name on day one. Might not turn to the banging of a drum on day one because they don’t know what banging on a drum is. So it’s teaching them to listen and learn.
J: That sound even has meaning and that it’s worth paying attention to, or showing us that they are paying attention to it right? So sometimes we think “we think they hear it” but they’re not even really understanding how to show us that they hear it so it’s a long process.
D: You guys can attest to that more than us, you see them weekly.
J: Yes, yes we can. So it takes a little while but once the kiddos are fully mapped and they’re expected to have good, or as good as access to sound that they’re going to have… what does that mean? What does a cochlear implant sound like to our kids?
D: You can’t ask a kid what it sounds like because they’ll just say that it sounds like sound! Those that can tell you that… when we’ve talked to adults and adults have described how things sound to them who have something to compare it to, they had sound at one point and lost it and now they’re hearing again, they’ve often described it at first as being robotic, some say Mickey Mouse, some say Donald Duck, some say everything, but robotic is the one word that they come up with. However if you talk to them again at certain periods of time, that perception is gone. So it just becomes a normalized sound. So when you’re talking about a child who’s had no access to sound, what they have access to is what they’ve only ever heard and what we have to say is the children with good access with their implants, their speech sounds very normal compared to normal hearing peers. So we know that what they’re getting through their implant is very close to normal hearing speech because otherwise they wouldn’t sound as normal as they do.
J: Right, the input matches the output to some extent.
D: exactly, what they hear is what they say.
M: there was a cool study, it’s a video, I don’t know if it’s on youtube, it probably is at ASU where it was a girl who I think was unilaterally implanted so she has normal hearing in one ear and then severe to profound hearing loss in the other ear and she got an implant and after it was mapped kind of they went through and presented her with different
J: sound clips?
M: Yeah sound clips so that we could hear what it sounded like to her and it sounded remarkably close to what the normal passage sounded like.
T: Yeah I’ve seen that, have you seen it?
J: Yeah I’ve seen it.
T: We should put the youtube video on our show notes so our listeners can see.
D: There’s a lot of videos out there on the Internet and some of them are good and some of them are a little bit misleading unless you know what you’re listening to because I think there’s one out there that takes you through different channel implants like a one channel implant which is what they first came up with in the 80s to a 2 channel to a 6 channel to a 16 channel to a 22 channel so everything that we have now from all manufacturers is top of the line and is not the same as a 1 channel implant which sounded like nothing you’ve ever heard before and wouldn’t want to listen to that all day if that’s what you could hear. So be very careful when you’re surfing the Internet that what you’re listening to is from a reputable site, you know, triple AAA, ASHA. Those kinds of sites—the American Academy of Audiology and the American Speech-language Hearing Association. Be careful what you’re landing on because some of them can tend to be a little biased.
T: Yes I’ve seen that video that goes through—I feel like that’s one of the first videos that I’ve ever seen. My undergraduate was a little biased and that was how we were exposed to what a cochlear implant was. But even then, even so, if that’s what it sounds like to us with normal hearing, your brain gets used to it if you have it implanted and that’s the way you listen. So even adults I’ve heard over time it becomes normal sounding to them. Even the adults that are saying it sounds like Donald Duck in the beginning.
J: I think also there are a ton of different factors that impact outcomes and what sound is going to sound like so I think talking to other people and asking questions is really good but also communicating with your audiologist and the implant team in terms of what the expectations are because from child to child it can vary a lot. Is that accurate?
D: Absolutely accurate.
M: Dawn touched on it earlier that you have to do medical imaging so we need to make sure that the structures will take an implant. Part of that is the auditory nerve and whether that’s intact or whether there may be some differences or it may be a little bit smaller and all of those things factor into how a child will perceive sound.
T: Speaking of that, that’s probably something that you have to counsel families beforehand about, what their outcomes could be. What types of counseling do you provide to families as they’re going through the process?
D: Well I think we’ve kind of talked about a lot of it already as far as timelines for procedures and activations and ability to be able to hear with the device. Whether our expectations of what the child is going to be able to hear with the device which are going to vary greatly based on what the cause of the hearing loss is or the etiology of the hearing loss is. So we have to be careful about what expect or what parents expect. We counsel a lot about the different manufacturers of devices and discuss with them each one, helping them to make an informed decision about which one is gonna work for their child and their family. That’s a big one. We spend a LOT of time on this actually. The great news is that these parents have three great manufacturers with three great arrays of devices that are all very reliable and all give the kids great access to sound. I always liken it to being choosing between like a Lexus, a Cadillac, and a Range Rover, I mean or a Mercedes, because they’re literally choosing that kind of technology for their child. So there’s not one bad choice, it’s really more what parents touch it, they hold it, they feel it, they take it apart, what they’re gonna be comfortable with. So that we spend a lot of time on.
T: What are the top questions you get during the process? Do any questions pop up a lot?
D: I think the first question’s always, “well which do you think is better?”
T: I’ve been asked that before.
D: We’re not salespeople and it makes no difference to us which manufacturer they choose, so it’s hard to answer that question because my answer is, they’re all good. There’s not a bad decision that you can make here.
J: What questions do you get about the surgery itself or do most of those questions get directed to the doctor?
M: They’re mostly asking the surgeon those questions. I feel like I have just kind of said in general, it’s actually not– even though it’s invasive, it’s on the head, don’t get me wrong, it’s a surgery and it’s on the head– but it’s shorter than you might expect it to be and the healing process is quicker than you might expect it to be as well. Again, it’s a surgery, they’re under anesthesia so I generally just give those two statements and then have them direct specific questions to the surgery.
D: I think parents just want to know, would you do this to your child? They want to know that this is okay, you’re on board with this, you understand where I’m coming from– But you know, to know that it’s not just us saying, “Well go ahead and put an implant in,” you know? There really is thought behind our recommendations and we have principles that we stick to and we wouldn’t recommend unless we felt like it was absolutely necessary. I think the biggest apprehension for everybody is putting a child under anesthesia at 8 months, 9 months, 10 months, and we all get it. You know? Even putting an adult under, we all get it. It’s not only that but it’s handing your child over to somebody. You’re the parent, you’re making all these decisions and there comes a time when you have to release the child and hand them over to a team of excellent professionals and there’s a lot of apprehension around that and I think that’s a big part of it as well.
T: I think it’s important to remember that, as someone who doesn’t have kids, it’s still hard for me to envision how scary it is. I can be sympathetic but not really empathetic, I’m like, “Just do it already!”
T: But it’s important to remember that I don’t know what it’s like to have a child and…
J: to have to make the decision.
D: And it is a life changing decision for that child and that family too. I mean it absolutely is a life changing decision. And you know it’s like any surgery, there’s no guarantees of success. Can I tell you that most of them are successful? Absolutely! 99.9% of these surgeries are successful but there’s always that 1% that things don’t go as planned, whether the implant doesn’t work or the implant fails or it’s not in the right spot, you know? It’s so rare but it does happen. And you have to acknowledge that.
J: Besides apprehension about the surgery itself, can you think of any other reasons why a family might not be ready or not want to go through with the cochlear implant process?
D: I think sometimes parents have a hope that if they wait something better is gonna come down the line. You know, somebody’s always doing research, somebody’s always saying something about repairing hair cells and restoring hearing. And so I think a lot of times, “maybe if I wait 6 months or a year something else will come down that I don’t need surgery for.” We are not even close to restoring hearing for sensorineural hearing losses at this point. But I think there’s always that hope. I think that a lot of them hold onto that. I think there’s a lot of family dynamics that we may not privy to as providers. LIke you said, we’re just like, “just do it already!” but there might be family dynamics happening there behind the scenes that we don’t know what is happening and can’t understand why they haven’t moved forward even though it’s appropriate.
J: Yes I think some of those family factors are… families are experiencing those, whatever that might be, all day long, all week long, and then they come into this one room, into an audiologist’s office, and one person is telling them this, but the entire rest of their world is telling them don’t do it! So I think that can be hard, even as a provider who goes into these families’ homes, sometimes it’s hard to understand what that might look like. I think there is also a normalization factor for us because we work with these children every day. But a lot of these families, I would say most families, have probably never seen a cochlear implant before.
D: That’s very true, and I think that’s the importance of family to family connection as well. You know whether it’s here at Child’s Voice, the parent groups, the EI groups, the baby groups, touring the school, seeing how successful children can be, but also the manufacturers themselves offer connecting groups for parents if they’re considering it. Parents can take their child to see an adult with cochlear implants. You know, just getting that exposure because it is so what we call “low incidence” which means it doesn’t happen very often. So getting exposure to other families and people that have gone through the process is also very important.
J: Yeah I’ve seen that be really helpful for some of my families. They have so many questions like, “what does it even look like?” and looking up pictures online isn’t the same as seeing it on a person in real life. So I think those are really valuable connections to offer to families.
T: I think we’re almost ready to close out, but before we do, do either of you have a favorite success story to share?
D: Yeah, I remember a child who is a recent graduate a couple years ago, a year ago. So when she came into my office for the first time for a tour to the school, she was 2 and not walking yet and had just gotten implanted and had no language and no speech. She wasn’t really even responding to sound and also had been diagnosed with a vision issue as well so we knew she was gonna lose her vision as well. And graduated and gave the best speech I had ever heard anybody give at graduation and these are seven year old kids that get up in front of– on the stage in an auditorium in front of hundreds of people and her speech was beautiful, her language was beautiful, and that one actually kind of made me a little teary.
J: That’s awesome.
M: I don’t have one particular story but I just to play off of what you said, I mean I think that there are so many stories that are similar not in her diagnosis, the vision loss, those things, but just the fact that these kiddos have nothing and then they’re implanted and as long as they’re getting the appropriate therapy and follow-through, I mean they end up going to their mainstream schools and succeeding. We have alumni who are, I mean Mitch is a perfect example, who’s here now teaching and a lot of our alumni are in college and many of them have cochlear implants. I think it’s all thanks to that technology as well as people like you guys and the teachers and the families really for buying in to the whole process. It is a process but it’s so worth it. I think every year– I’m emotional because I’m pregnant and I’m gonna start crying now– but every year I’m at the graduation and it just blows me away.
T: I love the graduation.
J: Well that seems like a good place to wrap up. Dawn and Megan thank you so much for joining us today.
D: You’re welcome!
M: You’re welcome! Thanks for having us!
J: And listeners we would love to hear from you. So therapists, audiologists, teachers of the deaf, what’s your experience counseling families through the cochlear implant process? What challenges do you run into? What questions do families ask you?
T: Parents if you’ve already been through the process, what was your experience like? What recommendations do you have for other families? If you’re going through the process now, what questions do you have about the process? What has been your experience so far?
J: And then next time we’ll be talking with a parent about her experience going through the cochlear implant process with her son and her advice for parents who are new to the process.
T: Yes be sure to join us next time. We had a great time today getting the audiologists’ perspective. We loved having Dawn and Megan on. We’re very excited next time to be able to speak to a parent about her own experience. We think it will be a great episode. As always we release new episodes every other week on Wednesdays.
J: Thanks everyone for joining us for another episode of All Ears at Child’s Voice.
T: We’re your hosts. I’m Tatum Fritz.
J: And I’m Jessica Brock.
T: As always we’re on instagram and twitter. You can find me @tatumfritzslp and you can find Jessica @jessicabrockslp.
J: You can also email us at firstname.lastname@example.org and find episodes show notes and archived episodes at Child’s Voice’s website, childsvoicesho.wpengine.com.
T: And if you’re interested in learning more about Child’s Voice, Child’s Voice is on facebook as well as twitter and instagram with the handle @childs_voice.
J: We’ll see you next time!