All Ears at Child's Voice podcast Episode 19

On episode 19 of All Ears at Child’s Voice: A Hearing Loss Podcast, Tatum and Wendy interview Meredith Berger about aural microtia/atresia. Meredith is the director of the Clarke Schools for Hearing and Speech New York Campus and is currently conducting research on the experiences that parents of children with microtia/atresia have following their child’s birth.

Tune in to the episode to hear Meredith share about…

  • What aural microtia/atresia is and how aural microtia/atresia can impact hearing and spoken language development
  • How aural microtia/atresia is currently being diagnosed
  • The current inconsistencies in the field of hearing loss when it comes to recommending amplification and intervention services for this population
  • The current lack of knowledge in the hearing loss field regarding aural microtia/atresia and the need for additional research regarding this population
  • The exciting research Meredith is conducting and how parents of children with aural microtia/atresia can get involved
  • And more!

Resources:

Here are some resources discussed in this episode and/or that you may find helpful after listening to this episode:

  • The Ear Community
  • Hands and Voices
  • AG Bell
  • Hearing First
  • Facebook Groups:
    • Microtia Parents
    • Microtia
    • Adoptive Parents of Children with Microtia

Research Study:

Meredith shared how are listeners in which they can get involved with her research study. She is currently recruiting parents who have children with aural microtia/atresia that are between the ages of six months and six years and are proficient in English (parents may speak other languages as well but must be able to participate in an English-based interview).

Where to Find Meredith

 

References

During our conversation, Meredith frequently referenced the research currently available on this topic. She shared with us the following research articles as a reference for the information she shared on the show:

Alamoudi, Uthman, and Paul Hong. “Readability and Quality Assessment of Websites Related to Microtia and Aural Atresia.” International Journal of Pediatric Otorhinolaryngology, vol. 79, no. 2, 2015, pp. 151–156., doi:10.1016/j.ijporl.2014.11.027.

Alasti, F, and G Van Camp. “Genetics of Microtia and Associated Syndromes.” Journal of Medical Genetics, vol. 46, no. 6, 2009, pp. 361–369., doi:10.1136/jmg.2008.062158.

Attaway, Judy, et al. “Effect of Amplification on Speech and Language in Children With Aural Atresia.” American Journal of Audiology, vol. 24, no. 3, Sept. 2015, pp. 354–359., doi:10.1044/2015_aja-15-0021.

Billings, Kathleen R., et al. “Management of Hearing Loss and the Normal Ear in Cases of Unilateral Microtia with Aural Atresia.” The Laryngoscope, vol. 126, no. 6, 2015, pp. 1470–1474., doi:10.1002/lary.25530.

Hoyt, Adrienne T., et al. “Sociodemographic and Hispanic Acculturation Factors and Isolated Anotia/Microtia.” Birth Defects Research Part A: Clinical and Molecular Teratology, vol. 100, no. 11, 2014, pp. 852–862., doi:10.1002/bdra.23282.

Koenig, Julie L., et al. “Renal Ultrasound Abnormalities in Children with Syndromic and Non-Syndromic Microtia.” International Journal of Pediatric Otorhinolaryngology, vol. 113, 2018, pp. 173–176., doi:10.1016/j.ijporl.2018.07.026.

Kolodzynski, Mn, et al. “Abnormal Soft Palate Movements in Patients with Microtia.” Journal of Plastic, Reconstructive & Aesthetic Surgery, vol. 71, no. 10, 2018, pp. 1476–1480., doi:10.1016/j.bjps.2018.06.004.

Liu, Qiang, et al. “Maternal Risk Factors for Severe Microtia/Atresia in China: A Case-Control Study.” International Journal of Pediatric Otorhinolaryngology, vol. 115, 2018, pp. 139–144., doi:10.1016/j.ijporl.2018.09.033.

Van Hövell tot Westerflier, Claire V.a., et al. “Parental Preferences for the First Consultation for Microtia.” International Journal of Pediatric Otorhinolaryngology, vol. 106, 2018, pp. 10–15., doi:10.1016/j.ijporl.2017.12.033.

 

Special thanks to John McCortney & Michael McCortney for their work recording All Ears at Child’s Voice episodes. Episodes of All Ears at Child’s Voice are graciously edited by John McCortney.

 

Disclaimer: Child’s Voice is a listening-and-spoken-language program for children with hearing loss. All Ears at Child’s Voice: A Hearing Loss Podcast is a resource provided by Child’s Voice. Reference to any specific product or entity does not constitute an endorsement or recommendation by Child’s Voice. The views expressed by guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent. Views and opinions expressed by Child’s Voice employees are those of the employees and do not necessarily reflect the view of Child’s Voice.

 

Episode Transcript:

Haley:                                Welcome to All Ears at Child’s Voice, a podcast discussing all things hearing loss. We aim to connect parents with children with hearing loss with the professionals who serve them. I’m Haley Gubbins and I’m a P1 teacher here at Child’s Voice. We focus on listening, speech, and language development for three to five year olds. This is my second year at Child’s Voice and I’ve loved working here. My favorite part of the job is watching the growth the students can make in such a short amount of time, to see a kid go from two-word utterances to a five-word spontaneous sentence has got to be the most rewarding part of this job. I also feel so supported by the staff and I feel like we are constantly pushed to grow as professionals. This is truly a unique program and place to work. Last week on the show, we got to hear from four amazing mothers about their journey raising children with hearing loss. It was such a special episode. Go back and listen if you haven’t. And now to start the show.

Tatum:                             Welcome to All Ears at Child’s Voice, a podcast discussing all things hearing loss. We aim to connect parents with children with hearing loss with the professionals who serve them. We’re your hosts. I’m Tatum Fritz.

Wendy:                             And I’m Wendy Deters. We are so excited to have today’s guest on the show, Meredith Berger. She joins us to discuss the unique challenges experienced by children with aural microtia and atresia. If those terms are unfamiliar to you, don’t worry, we will be defining them for you. So please stay tuned.

Tatum:                              And Meredith is joining us remotely today from New York. She is the director of the Clarke Schools for Hearing and Speech New York campus since 2008. She previously worked as a Deaf and Hard of Hearing Education Specialist at the Ear Institute and Hearing/Learning Center at New York’s Eye and Ear Infirmary. Additionally, she has past experiences working as an itinerant teacher of the deaf and as a preschool teacher of a classroom for children, children with hearing loss. She also has past experience working in early intervention. She received a bachelor’s degree in education from the state university of New York college Buffalo and holds two master’s degrees from Canisius College in Deaf Education and Educational Leadership and Administration. She is currently a doctoral student in Deaf Education at the Teacher’s College at Columbia university. Meredith, can you tell us more about how you got interested in the hearing loss field?

Meredith:                         First, thank you very much for inviting me. I’m very excited to talk to you today. I like many hearing people, my early interest in deaf education came from my early interest in sign language. And I ended up doing my graduate work in deaf education and was lucky enough to go to a program that’s considered a comprehensive program. So there was a little of this and a little of that. But I was there at a time just post cochlear implants being approved for use with children. And so where I was in Buffalo was considered an educational rehabilitation site for children who had received surgery. And so really my interest in developing auditory skills and language from that perspective really grew out of that graduate school experience. But I would say that it was really firmly planted when I went from being a classroom teacher for deaf children to being an itinerant teacher and realizing the impact that not having well developed auditory skills or appropriately fit amplification would have on a child’s ability to make the most out of the opportunities in their classroom. And so that was 20 some odd years ago and at this point, but it’s an amazing field to be in.

Tatum:                              Yeah. That’s so cool to be there like in the beginning too, that’s exciting.

Wendy:                             So now you’re the director of the Clarke Schools for Hearing and Speech New York campus. Can you tell us what your role is there right now?

Meredith:                         Sure. As the director of the program, I say it’s everything from meeting families the first time they may come to tour to supporting new professionals in the field who are starting their professional lives here at Clarke and coordinating with all of the outside agencies that oversee us aside from just the things related to working with deaf and hard of hearing children. We have an early intervention program that’s part of the state approved system and we have a preschool program that’s also approved as a special education preschool in New York state. And so children who come here are largely able to come here through public funding and their IFSP or IEP. And so kind of dealing with all of the, the overlap between real families and real children and their needs the bureaucracy of these systems is kind of where I try to hold everything in balance.

Wendy:                             That seems like a very large task given you are in New York.

Meredith:                         Yeah, it is.

Wendy:                             So can you, just out of curiosity, because we’re early intervention providers here, do your therapists go into people’s homes or did the children come to the center?

Meredith:                         That’s a great question. New York state is one of the States that allows for early intervention to be provided in a center based location based on a child’s unique needs. And so our program in New York is entirely center based. And there are pros and cons to that. The way the system is set up, we actually are able to be involved with a family really from the point of referral because we are part of the system, so to speak, we can actually facilitate the referral to early intervention. We have a service coordinator who is in that official role within early intervention as kind of a case manager. We’re able to do those early intervention evaluations. We have an audiologist, so we can do audiology testing and fit children with hearing aids or BAHAs, you know, when they’re weeks or months old. And that’s all part of the early intervention system. And we’re also lucky because the system here allows us to provide hearing aids and BAHAs with no out of pocket costs to the parent. It’s covered by early intervention. And so we’re able to facilitate that happening as quickly as possible. And I often say that because we are able to see children when they’re, you know, weeks or months old, probably one of the most important things that we are able to do as a center-based program is provide a parent-infant groups where parents get to meet other parents who have children with hearing loss who are around the same age, who are going through some of the same things at the same time to help them kind of expand and create a new network of support as they begin this journey.

Tatum:                              Early intervention here also covers can cover the cost of hearing aids. Maybe we’ll get into this later on in the conversation. We can talk about barriers to cost, but I think we have a barrier to BAHAs being covered specifically. I think they’re reimbursed at a lesser rate.

Wendy:                             Yeah. Because they’re not as common, they’re hard for families to obtain, they’re harder to get coverage. Providers don’t know as much about them. Service coordinators don’t know as much about them. So it is definitely a challenge.

Meredith:                         Yeah. And I would say as we talk more about my microtia/atresia like kind of one of the threads that runs through the conversations for this population is the fact that it is the low incident disability within a low incident population makes it challenging because, you know, even if someone knows about cochlear implants or hearing aids, they may never have met a child who is born with microtia/atresia. And so every point that a parent interacts with the system, they’re dealing with people who don’t know about their child’s needs, even though they often talk as if they’re the expert to the parent, you know? And so, so I think that’s like pouring salt in the wounds as, as parents are trying to navigate and learn about these systems they’re dealing with.

Tatum:                              Yeah, definitely. So we’ll get more into those issues as we, when we move into the main conversation. But one of the reasons why we asked you on today as you know, is we were able, or I think I saw your presentation at EHDI this past year, on this population, on children with micotia, aural microtia/atresia. And so before we move into the main discussion, can you share some more specifically about your personal connections to hearing loss and how you have become interested specifically microtia/atresia?

Meredith:                         I guess my story is a little bit atypical in some ways. My husband is deaf and uses bilateral implants and we have two daughters. Our older daughter is hearing. And then for when we were looking to grow our family, we decided to adopt. And our second child, our younger child, is adopted. She’s from China and she has bilateral microtia/atresia. She’s eight and a half now. And she has been home from China just over seven years. And as I’m saying this, I realized I meant to ask her this morning about talking a little bit more about her. She’s getting at that age where if I say, can I video you, you know, you answering this question, she’ll say like, no, and you can’t use it for a presentation.

Tatum:                              You can check with her and then we’ll cut, just let us know and we’ll cut whatever we need to if you want to share now.

Meredith:                         I’m sure she’ll be fine. It’s making me think that I’m careful about her privacy. But actually, even before we adopted our daughter, I had had an interest in children with microtia/atresia because of some like kind of things that just happened through work, you know. Years ago as an itinerant teacher, I worked with a child who had unilateral microtia/atresia who was also adopted. And at that time, the choices for amplification, it was essentially a metal headband that a bone oscillating hearing aid was put on and people didn’t like to wear it because it hurt and it rubbed the skin. It was tight. They’d get headaches. So a lot of times, you know, people who had unilateral microtia/atresia just didn’t wear anything because there weren’t really options for them. Once the first BAHA on a soft band you know, bone vibrating hearing aid with a soft band was approved by the FDA, it became a point where there were other options. And I realized a couple of years ago that we were working with a family here and the child had unilateral microtia/atresia and had not been aided. He was about two, two and a half. And he hadn’t been aided. And we weren’t questioning it at that point necessarily because it was the audiologist who was advising this. And we, at some point the mother came in holding a bunch of equipment and saying, you know, the audiologist gave me this and it was an FM system for his non-microtia ear and a BAHA on a soft band. And the audiologist handed it to the parent and said, “Well, try one and see how he does, try the other, see how he does, let us know.” And it struck me and struck our audiologist how vastly different that the counseling, the way it was done, leaving him unaided, like all of these things were compared to children who had sensorineural hearing loss of any degree really, in New York, which is a fairly aggressive, audiology culture as far as management. And so it really struck us that the way kids with unilateral microtia/atresia, which is most of the children that we come across were handled, supported, talked about compared to other kids. And it made us stop and really think about what we were doing and why we were doing it. And so through that process, I became more involved with microtia/atresia professionally. And so when my husband and I were considering our, the options as we were looking at adoption, we felt that because microtia/atresia is visible at birth, we would be able potentially to adopt a very young child because the diagnosis would be obvious at a very early point in the adoption world as far as things that can be identified.

Wendy:                             You said your daughter’s from China?

Meredith:                         Yes.

Wendy:                             So how is that type of physical disability perceived?

Meredith:                         So this is a very general comment, so if I say something in a way that offends one of your listeners, I hope they reach out and let me know how I can phrase things differently because I don’t want to speak on behalf of a whole country of people. But my understanding is that there is a lot of social pressure to conform. And so things that look different, even disabilities, are in a very different place culturally than in the US. And so even hearing aids and cochlear implants may be are less commonly used at earlier ages because of the concern about differences and standing out. I hope that’s changing. But we know a lot of children with microtia/atresia who were adopted from China. So if we assume that maybe that is part of the reason why that they were available for adoption, it’s consistent. And I would say the other piece for that is that the insurance system runs very differently in China. And so for many families who have children that may need medical care or supports for education or medically or what have you, there aren’t the same systems there. So what we think of as something that can be easily addressed there may be it can’t be as easily addressed.

Tatum:                              Yeah, yeah, that makes sense, that’s really interesting. I feel like that that could also be a topic of conversation. Just like, you know, the way that disability is viewed in different cultures. So as you know, before we jump into our main discussion each week, we always ask our guests to share a story from the past week and it could be something funny, something cute, something heartwarming. Does anything come to mind?

Meredith:                         Well it does actually. And again it’s about my daughter. It kind of struck me earlier in the week. So in addition to her identity as Chinese and now American, and as an adopted child, we’re also Jewish. And so she’s got lots of identities floating around in her world. But she came home from Hebrew school the other day and was showing me the work that they had been doing on learning different letters and reading some of the letters and the vowels and context. And it’s a very different alphabet reading system than English. And so she was telling me all of these things and she’s actually has a really strong talent for languages and accents. And so she kind of kind of commented off hand that her goal is to be fluent in two languages. And so I said, “Well, like, what languages do you do you have in mind, because there are a lot of languages to learn.” And she said, “You know, well, I already know English fluently and what other languages do you think I should learn?” And I said, “There are languages connected to the many identities that you have. Which would you be interested in?” And she said, “Spanish and French are really pretty common languages. Maybe I should learn one of those. But I did study Spanish for a couple of years,” which her school has a language program and so she took a couple of years of Spanish and I said, “Well yeah that’s true, but we’re not, none of us are actually Spanish. And so that wasn’t what I was thinking of, but it’s a great language to want to learn.” And so then she said, “Well what language were you thinking of?” And I said, “Well why don’t you tell me like what you think?” Cause it’s always like these layers of like hearing loss identity, Chinese, Jewish, New York city, what’s going on? Right. And so then she said, “Well, you know I did take Chinese for a couple of years at after school, but I don’t think I want to study that right now. And I’m taking Latin.” Which she started studying last year and she’s like, “I’m taking Latin, but I just realized the school year started and we haven’t started Latin class yet, so maybe I don’t want to study that one and I’m learning Hebrew already. But I really think that Spanish would be a better language to learn.” So, you know, it just made me laugh thinking of the fact that she’s got this awareness of all of these different languages in the world, they’re all possible for her because she has auditory access and skill and awareness and just her metalinguistic ability to really talk about some of these things, which just struck me a kind of a statement about where we are today in high expectations, opportunity, and technology.

Tatum:                              I just had a dad asked me this morning if his son could learn two languages. So I know it’s great for our listeners to hear about someone else interested in learning multiple languages and also having hearing loss at the same time.

Meredith:                         Yeah and I would say for parents who are thinking about that, if their children are using amplification that fits their hearing aid and they’re using it 10 to 12 hours or more a day and people are talking with them and it’s, the language is purposeful, there is no reason why their children can’t be multi-lingual. There’s even research about children with cognitive special needs learning multiple languages because of whatever is spoken in the home and then English at school. More than half of our families here in New York speak another language, a language other than English at home. And so as long as those kids have access and someone is talking to them, we expect them to be bilingual.

Tatum:                              Yeah. Well thanks for sharing that.

Wendy:                             I love that, just picturing her studying Spanish and Latin and Chinese and maybe some Hebrew. It’s Just incredible. So you mentioned briefly about aural microtia and atresia being diagnosed at birth because it is visible, but can we take a step back and define those conditions for our listeners?

Meredith:                         Sure. Thanks for asking that. I tend to use the term microtia/atresia but technically they mean two different things. Microtia literally means small ear. The microtia part could range from a stage one microtia, which is essentially, you have the roughly the shape of the outer ear, but it’s lacking some of the definition the pinna would typically have to grade four, which is complete absence of anything resembling an ear in any way. Grade three is the most typical where it almost looks like the shape of a packing peanut instead of a full ear. And then the atresia refers to something that’s supposed to be open on the body being closed. There are other kinds of atresias, but for aural atresia, it refers to that ear canal itself. And so the middle ear may or may not be formed as far as where the bones are. The bones may be there, but not attached to anything. Or there might be just bone, it ranges and that part can’t be determined without imaging. But the fact that the canal itself is closed typically, sometimes there’s a little opening that might be pitted, so it doesn’t actually go through to the eardrum. Typically that is what is considered aural atresia. There are so many different ways people refer to this. If you look on the CDC website, it’ll actually refer to microtia/atresia as anotia, which is a term meaning no ear at all. It’s that grade four. But that’s not what most cases are. And so it can be confusing also for families who are trying to figure it out if everyone’s using different terminology. I have a tendency to just say microtia/atresia but I’m more concerned about the effect on the hearing loss piece, you know, the effect of the atresia. So by the nature of the canal being closed, it means that the normal way that sound travels from the outside world to the inner ear is blocked, right. Because typically sound goes from the air, it’s funneled into the ear canal. It makes the eardrum move, the eardrum moving vibrates the middle ear and those bones in the middle ear as they’re moving cause the fluid in the cochlea, in the inner ear, to move and the impulse is sent to the brain. But if you have that canal blocked and you think about when you’ve gotten off a flight and your ears haven’t been popped yet or you’re underwater or you have an ear infection in a way that’s a similar situation, you hear sound, things are present as long as the inner ear is working, but they’re not clear enough to give you access to the discrete sounds that occur with listening to language.

Wendy:                             So what you just described is a conductive hearing loss. Is it also possible for children with aural microtia/atresia to have a sensorineural component or a mixed hearing loss?

Meredith:                         Sure. It’s possible. It’s not as common. And, it seems to be more common if the cause of the atresia is a syndrome where there might be kind of malformation not just in the outer ear but into the inner ear or with, you know, more craniofacial types of involvement. The inner ear, the cochlea develops at a different time than the outer ear. And so if it’s something that is within the realm of microtia/atresia, not related necessarily to a syndrome, it’s more likely that the cause is different than what would affect the inner ear development.

Wendy:                             Do you know of the children with aural microtia and atresia, what percentage of those children have a syndrome versus having this be an isolated difference in their development?

Meredith:                         Yeah, sure. So I’ve heard that it’s somewhere between like five and 20% are syndromic cases. But it’s also an area in general, as I said, the thread kind of runs through this as a low incident population. So it’s not an area where there is as much research as in other areas of hearing loss or even in other areas of visible birth differences or malformations. It’s not life or death stuff like issues with your heart or your liver or something like that. And so I always question the statistics honestly because it’s all based on what’s reported and each state has what they call a birth defects or a birth malformation registry. And in New York state it says right on the registry that the information is unreliable because of the way the reporting is done or not done.

Tatum:                              That’s interesting that they’re so up front about it. So earlier, I know you mentioned because this is a visible physical difference in these kids that they can be diagnosed quite early on. And I know at the talk that I saw that you presented EHDI you talked a little bit about like the challenges that families face when it comes to the diagnosis process. So can you share some about how the diagnostic process is currently taking place for families and if there’s, what kinds of challenges families are running into when it comes to this?

Meredith:                         Sure. So in theory it should work the same way that it works for any child born in the U S that, you know, the, the Joint Committee on Infant Hearing recommendations is that every baby born should be screened for the presence of hearing loss by one month. If they are referred for further testing, they should be, received diagnostic testing by three months at the latest. And if they have a hearing loss, they should receive amplification within a month of diagnosis and then be enrolled in appropriate therapy no later than six months. So in theory, that’s how it’s supposed to go. Right? But the reality is that this is different than children who have just a sensorineural hearing loss because it’s typically visible. And so what parents tell us quite often is that they were in the hospital, the baby is born, dad is typically seeing the baby before mom and dad will often see it sometimes before the doctor and Murphy’s law this is often a first baby to these parents. And so dad is looking at the baby and looking at the doctor and kind of to see if there’s a reaction. I’ve heard a number of parents say things like,” I thought it would just pop out.” Like maybe it was just folded from the birth canal coming through the birth canal. And so they kind of are trying to wait to see what the doctor says. Often people who are in the delivery room have never seen microtia/atresia before. And so they either may not notice it at all even though the parents have or they may give comments like, “Oh, we’ll look into that” type of thing. Like nothing, nothing helpful. But the parents have wondered and there are parents who in the delivery room or once they’ve gotten settled into a room post-delivery, they’re using their phones and looking up things like “baby with no ear” or you know, “missing ear,” that type of thing. And so they are diagnosing by Google. Often, sometimes before, you know, weeks or months before they meet a medical professional who gives it officially a name, depending on what the access is to services where their baby is born. And so depending on the luck of the draw will kind of determine who, who they happen to talk to. So a baby that has microtia/atresia will be considered a failed hearing screening or referrals hearing screening. So they’ll be sent for further testing in theory, if we follow one, three, six, but sometimes parents are told like, “Oh, this isn’t a big deal. They’ll probably hear fine out of the other ear. They passed the screening in that ear, don’t worry about it.” You know, things like that. And so the same information is not being given to, or the same care is not being necessarily given to these families as a child who has sensory neural hearing loss.

Tatum:                              I remember that story that you shared about like diagnosing via Google and I couldn’t even like imagine like the uncertainty, the stress parents might be feeling, the misinformation that they’re finding online.

Wendy:                             So you talked about the inconsistency in the diagnosis process. I think Tatum and I have both seen some inconsistencies in terms of recommendations for amplification too. So can you tell us what kinds of amplification options are available for children with aural microtia/atresia?

Meredith:                         Yeah. So what ends up happening, for again going, when we think of that one, three, six idea. So you would think that this baby is identified like literally at birth, but maybe they can’t get the actual ABR, which might be used to do the in depth diagnostic testing to just confirm that it’s just a conductive loss versus a conductive and sensorineural mixed loss and to confirm that the other ear is indeed hearing within normal limits. And so you would think that these are children who would get access to amplification quickly because you’ve got the information quickly about how they hear. But that is often not the case. Often similar to some of the information on unilateral hearing loss in general, a unilateral microtia/atresia could be dismissed because of assumptions that the other ear is fine and can carry you through life. But for children who are meeting with an audiologist and talking about amplification options, the parents will be told about bone vibrating devices. A couple of companies make them. These devices were initially designed to be surgically implanted, but the surgical piece can’t occur until children are over the age of five and have a certain skull thickness traditionally based on the FDA regulations. And so wearing the devices on a soft headband, that’s actually considered part of the medical device is the recommendation. And then the headband, is placed in such a way that the vibration where the, the bone vibrating device connects to the headband is pretty close to the ear. It’s usually worn right behind the ear and it mimics the natural phenomenon of our skulls actually vibrating when sound gets to about 60 decibels or so, which is conversational level. And so in mimicking that natural process, it takes sound that’s out of reach of children with this hearing loss and it brings it within normal limits if their cochlea is intact and formed. Doing that essentially gives them not necessarily the same access distance wise as far as like, you know, how natural hearing works and can hear things at a pretty great distance and can filter amazingly well, but it gives them access to the range of sounds that occur in spoken language. There are some barriers though because depending on where you live, you are dependent on your insurance covering it or you know Medicaid if that’s an option. Whereas like in New York it’s considered a hearing aid for early intervention purposes. But in other states it sounds like, you know, what you deal with in Chicago is that other things are covered, but BAHAs may not be.

Tatum:                              Yeah. I think the issue here is that it’s reimbursed at a lesser rate but is reimbursed. But then because of the lesser rate getting it through certain centers, they have to provide it at a loss to cost. I’m pretty sure that’s the issue.

Wendy:                             Right. So a lot of centers don’t distribute them because of just like Tatum said the reimbursement rates. So I know a family that I actually was working with this morning had to travel about maybe 40 miles outside of their suburban Chicago location to obtain their bone-anchored device and then they get their audiology services closer to home.

Meredith:                         And that’s hard. And, realistically, because there hasn’t been a lot of research done on outcomes for young children with unilateral conductive hearing loss because of microtia/atresia. And if early intervention and insurance don’t cover the cost, you know, doctors and audiologists don’t want to recommend something that they don’t feel they can say is needed. Right. Because it is a big expense. The challenge that we have is that we know when they’re Googling, when a parent is Googling that things that they’re typically coming across first are the surgical reconstruction options for either opening up the canal or reconstructing the outer ear with or without the canal. Those have very little to do with hearing and they have nothing to do with hearing during that critical period of language development. And so we always talk about trying to reset it to like, what can you do now? It’s great to do that later. And some of the surgical websites, like some of the plastic surgeons, the otologist and ENTs, even if they have big practices based on this, often on their website, it will say, if your child has microtia/atresia in one ear, you only need to do something if a delay develops.

Tatum:                              Yeah.

Wendy:                             Oooh.

Meredith:                         And that makes me cringe because it goes against the whole purpose of newborn hearing screening. Right.

Tatum:                              Yeah and Early Intervention.

Meredith:                         Because the newborn hearing screening is not about finding out who has a hearing loss. It’s about doing something about when a baby has a hearing loss. And so to do nothing and wait and hope we can catch up later is mind blowing to those of us who work with babies.

Tatum:                              So it sounds like we know in some areas a barrier could be the cost. When families actually have devices, there is some additional barriers that we know that they face. Mainly I just want to talk about the headband. There’s a lot of issues with the headband that my families experience first. Like if their child is a boy, there’s some cultural and social norm considerations around wearing a headband. And then also like the headband is just frustrating sometimes. falls off. It’s hard to stay in place. Or if a kid has the glasses, I could go on and on about this, some about the headband?

Meredith:                         As a parent, I didn’t deal with this with my two week old or two-month-old or what have you. I started dealing with this as a parent when my daughter was 21 months old. But even at that point, I was dealing with the fact that whenever a baby is put down, they are in something that their head is resting on. Right. Even at the age where they have head control, they’re in a stroller, they’re in a car seat, they’re in a high chair and if they’re younger and have less head control, obviously that’s even more often. And so the devices pop off a lot and you’re dealing with those kinds of things. But the social piece at the beginning is a big thing. It’s this reminder, especially if there’s a boy and statistically more children, who have microtia/atresia are boys than girls. And so when we work with families, with young children, we talk a lot about like the grief process and the kind of adjusting and the learning curve and all of those things. And we don’t want parents to live in a state of denial, forever, but denial when you’re going through something hard at the beginning is a really healthy and appropriate coping strategy. And so, you know, if you have a baby who has a sensorineural hearing loss, you can take that hearing aid off or when you first get them out of the crib, you’re snuggling and you have those moments of bonding without the reminder. You can just be without thinking. But if you have a baby who has microtia/atresia, you can’t forget it. You see it all the time, right? You don’t have that period of time of checking out. And then you have on top of that, someone is saying, put a headband on your little baby boy. And whether or not they have hair as an infant, people are assuming, you know that they’re a girl if they have a headband on and they’re asking questions that you don’t even have the words yet to be able to say out loud without falling apart. And that head band piece is really, really hard. I think the companies are trying to do a better job of having, you know, colors or sports themes or animal themes. There are some families that will have like made other types of headband wearing options that they sell on Etsy. I’m not a huge fan of those because like people don’t realize the soft band itself as part of the medical device and is made to have a certain tension so that the contact from where the BAHA device connects to the soft band is placed for the sound quality. But if someone is going to buy something off the internetI would say to bring it to your audiologists so you can have it tested in the booth to see if there’s any loss of sound quality or loudness for the child.

Tatum:                              Yeah that’s nice so that they can still have the option potentially to use different designs, but have it confirmed by the audiologist. I know recently some of kids have had cuter designs and like more like stereotypically like boyish designs. I think I have a kid with like some dinosaurs on his and I think that does help to help people who are interacting with the child.

Meredith:                         Yeah. I think it helps for parents to feel that that way. I think that depending on just how they, who they are and how they respond to things, it can be a harder barrier to overcome than it is for somebody else. Right. And we often say here that when we get a phone call from a new family, like that’s when therapy in terms of meaning of the word support, that’s when therapy starts. It’s not when they’re finally approved. It’s that first phone call. Cause you’re probably the first person who is reading between the lines and what they’re asking versus what they’re trying to ask versus what they don’t even know they’re asking. Right. And sometimes as people in the vicinity, whether family members or professionals, we want people to like be happy and okay. And so sometimes we don’t validate the fact that this is hard. They didn’t expect this. They don’t know why it’s happening. They’re getting conflicting information. And sometimes we have to say to parents like, I know you want me to say like, it’s okay not to wear this. That’s a decision as a parent, you have to make that decision. But we’re at, we’re saying, we want your son to wear this for these reasons. I know this is hard. And just stop talking. Because we say, “we know it’s hard but…” And then we’ve invalidated like that first part. And we try to point out that the same way you do when a baby is wearing hearing aids and they’ve discovered they have hands and they pull it off and you have a parent who will say, “Oh, they must not like their hearing aids. That’s why they’re pulling them off.” It’s like, no, they’re going to pull up their hat, their socks or shoes you’re going to lose. You’re going to get duplicates, triplicates of those things, because they’re going to lose them so often when they’re infants, the hearing aid and the BAHA, the soft band, whatever devices being used, it’s the same thing. It’s like they’re not, they’re going to take it off because they have hands and that’s what babies do.

Tatum:                              Yeah, exactly.

Meredith:                         And so if we can get parents through that part and validate the fact that this is hard and not what they expected, but they can start to see the benefit to their child, you move forward.

Wendy:                             Recently we have started to see some exciting alternatives to headbands pop up. Are you seeing those as well in your center?

Meredith:                         So we are. Competition is a really good thing. And so the companies are responding to requests from parents, but they’re also responding to what the other companies are doing. And so we’re seeing things like a different kind of headband. It’s almost looks like the headband you might use for a Bluetooth headset or something that one of the companies has.

Tatum:                              Are you talking about the SoundArc or that comes like from behind?

Meredith:                         So talking about the SoundArc. MED-EL has the ad here, which has the, it’s the adhesive sticker that goes on to the mastoid, which is the area where like a soft band would be used and you connect the bone conduction device that way. But it also has a soft band wearing option. These options are really exciting to see because it gives parents and kids choices.

Wendy:                             So Meredith, in the earlier part of the show we talked about the percentage of children with aural/microtia atresia that also have genetic syndromes, what other populations have a higher incidence of aural/microtia atresia?

Speaker 2:                        It’s really interesting to see the information on this because what people often ask, either when I’m presenting or just kind of in conversation is it seems like, um, we see a lot of children who are Hispanic who seem to have microtia/atresia is that like a thing or is it just like our clinic or something? And it is actually a thing. The highest rates far as like the children we would typically see in the US would be children who are of Hispanic descent, Hispanic without African ancestry. And also non-Hispanic, native American Indian and native Alaskan populations have really high rate, the Hispanic I’ve seen as compared to white European descent as seven times higher, Asian I’ve seen four times higher. And then African or African American as being the population with the smallest likelihood or smallest population of children with microtia/astresia. There was actually an interesting article that I came across. It’s from 2014 but I just came across it recently that compare that actually compared children whose mothers or Hispanic from Mexico who immigrated to the US after the age of five or before the age of five. And if the mother came to the US after the age of five, the child had a higher likelihood of having microtia/atresia

Tatum:                              That’s so interesting and such a specific statistic.

Meredith:                         I know.

Wendy:                             My mind just went all over the place with environmental toxins what causes that. That’s a rabbit hole we won’t go down but that’s fascinating.

Meredith:                         Yeah. It’s so interesting. And then I came across something else that was talking in general about the, what I hate this term, but it’s the term the CDC uses, the tracking of birth defects. And there was something that I came across recently that said that for the things that they track, which are like certain kinds of heart defects, liver and kidney defects, like those types of things that in general Asian populations have a lower rate of all of those things except for microtia/atresia.

Wendy:                             Hmm.

Meredith:                         That’s fascinating.

Wendy:                             Yeah.

Meredith:                         And I think what they’re suspecting is that there are certain things that are clearly environmental somehow. And then there are certain things that are maybe genetic and environment interacting.

Tatum:                              Yeah exactly, I would say the majority of children that I’ve worked with who have had, aural microtia/atresia have been Hispanic. So yeah I’ve definitely seen that. We’ve talked a little bit about the inconsistencies when it comes to professionals recommending amplification. Something else we’ve seen before is inconsistencies with the recommendation for intervention. And I know, you’ve kinda touched on this when you’ve mentioned like some providers saying that it’s all right unless a delay develops. But are there any current like best practices for recommending intervention, are all getting intervention for this?

Meredith:                         So I assume hat many kids are not getting intervention for this. It’s not well tracked for a number of reasons. And I think that the challenge we have with recognizing first that one ear does affect language learning and brain development as far as that balance and binaural summation and hearing in a balanced way between your left ear and your right ear and access to sound and filtering and like all of those things that affect unilateral hearing loss in general apply to unilateral microtia/atresia. But those are challenges that the unilateral hearing loss, sensorineural hearing loss population has as well. So I think that I would make the assumption without taking too much of a risk that there are children who have not received therapy who should, and then whether it’s when the child is two and a half or three or when their child is older and having trouble in school, a parent is then saying, “well, do you think this is because they didn’t have therapy and/or they weren’t using amplification?” You can’t tease out then what part is what. But to me, if we had provided the support at the beginning and then something came up, we would know for sure it wasn’t because the hearing loss wasn’t addressed. And so here we have a pretty strong approach to it, you know, because for any child who comes here, like the basis for our listening and spoken language trajectory is you have auditory access. And so if a child is coming here, unless it’s a very, very unique case where we’re working closely with the primary audiologist to manage, if a parent chooses not to use amplification, we’re not the right place, right? We don’t have the, all the tools we need to have fidelity to that child. And so, because of that, we have had children who as they’re developing, it’s clear something else is going on. And the fact that they have unilateral microtia/atresia didn’t stop the stop the process of figuring out what those other things were because they got early intervention. And so we had a child who was diagnosed a little over two as being on the autism spectrum. But if he had not received early intervention, they would have possibly taken another year or two before they considered autism as a diagnosis because they were hung up on it must be the hearing loss. And, and to me that’s a tragedy that’s preventable. The types of recommendations we make for children who have sensorineural hearing loss for therapy and support are exactly the same. We want them to have auditory based speech therapy a couple of times a week. We want the family if the child is younger to participate in a parent-infant or parent-toddler group and we want them to move on to a two year old supported group because we want to make sure that a delay doesn’t develop that was preventable. It’s so much easier to keep up with typical development and make sure that child is working to their cognitive potential then to try to figure out how to catch up later.

Tatum:                              Yeah. And exactly as you mentioned, like that’s the whole point of newborn hearing screenings. That’s the whole point of getting diagnosed early. That’s the whole point of the Clarke schools, Child’s Voice. That’s like our mission. We talked a lot about inconsistency today, inconsistencies in care and recommendations in devices. Also, you’ve mentioned a lot too also our lack of knowledge on this population in general due to the lack of research. So we wanted to give you a chance to talk a little bit about the research study that you’re currently doing. So will you share with our listeners..

Meredith:                         Thank you so much.

Tatum:                              What you’re doing and maybe how we can help too?

Meredith:                         That would be great. So I will definitely send you the flyer that has the information, if you’re able to add it to show notes and, and as well as the studies that I’ve mentioned. So want to know more and I’m tired of hearing about decisions being made cause there’s not enough research. And so I decided that I’m going to do the research. And so the first research study that we’re doing is based on getting feedback from parents on what their experiences were after their child was born. And so we want to know when did they notice, who did they, who spoke to them, what were the things they were afraid of or the questions they had at the beginning. And then as the process kind of evolved and we’re really in my mind, we’re looking at kind of the first six months, birth to six months because I think like 1-3-6 is so ingrained in the way we think But we want to see, um, what information they wish they had. What did they have? What influenced their decisions to use or not use amplification to enroll in early intervention or not like, you know, even what specialists, you know, were they refer to a craniofacial clinic or were they given a list of other types of consultations to have to look at, heart or vision or kidney, things that develop at the same time as the microtia, to see what themes emerge across these interviews with parents that can help first identify directions for future research, but also to help us share with professionals the impact what they say or do may be having on the families that they come across. So we’re recruiting, parents who have children with microtia/atresia. It can be unilateral or bilateral. We want the children to be between six months and six years of age. And so like a family, if they have a four or five month old, they could fill it out now, but we would wait a little longer because we want them to be past that first six month period of time, but not so far past that they don’t remember the details. And I’ll say that we started recruiting on a Sunday. One of our ways is through like the microtia/atresia Facebook groups for parents. And within the first three or four days we had 50 people enroll, which is big, we’re past a hundred right now. But we’re looking for more for a number of different reasons. And so the fact that within like a week and a half to two weeks, we had like almost a hundred people register to participate to me says a lot about how much these parents are looking to be seen and to share their stories.

Tatum:                              Yeah, we’ll definitely include that info in our show notes. And we can include the handout too.

Wendy:                             Is there a way that you can briefly like say the name of your website or just a brief way to tell parents what to do so they can remember>

Meredith:                         Sure, we have place where people can sign up to participate. The web address is bit.ly/microtiaatresiaparents.

Tatum:                              Microtia/atresia parents. Okay, we’ll include that.  Can families participate if they don’t speak English currently?

Meredith:                         So I hate saying this for a number of reasons. This point for this particular study, we are asking for participants who have enough English fluency to be able to fill out the initial survey and to understand the kind of informed consent process and to be interviewed in English. It doesn’t have to be their first language. We are looking at ways of doing this in Spanish particularly because obviously the numbers of families that may not be able to participate. The fact that of the three of us who are involved with us, none of us are fluent Spanish speakers added the layer of complexity we didn’t have, we didn’t plan for, for this part of the study, but it’s the first of many. And so I would say for anyone who has families that have limited English proficiency but who wants to participate to just keep them in mind because we will be circling back at a future point for it to try to capture the experiences of those families as well.

Tatum:                              Yeah, definitely let us know whenever you guys are able to include people who don’t speak English. Even like for this podcast, we would love to be able to provide it to our Spanish-speaking families. Why don’t we move on to our last question, Wendy, if you want to go for it and then we’ll wrap uo.

Wendy:                             Yeah. So as a way to sort of close out the show, we like to make sure that we’ve touched on everything that we all wanted to discuss today. So what advice do you have for families or professionals when it comes to this topic? If you can give us sort of a general piece of advice that you find very important.

Meredith:                         Well, I think that for professionals who are likely to be the ones who to hear this first before new families, that to keep in mind that for whatever you know about families at based on your years of practice, that it’s both the same and different for this population of families and that there are things that these families may be going through that haven’t occurred to you. And really trying to connect with either other professionals who have more experience working with families of children with microtia/atresia or to connect the families with other families who are raising children is going to do more than almost anything else you can think of initially. You could be that port in the storm for a family that has a lot of questions and few places to go for information. And these are children who have, the sky’s the limit for them. The hearing loss piece, this should be an easy thing for us to address. And the supports that we provide should be enough to enable the child to reach their cognitive potential, whether they have just microtia/atresia or a part of a syndrome that has other impacts. And, I think that if we work, if we work purposefully in supporting these families, we’ll see the, you know, the positive outcome with these children.

Wendy:                             Wonderful. I think that’s excellent advice to close them. So why don’t we wrap things up there. Meredith, thank you so much for joining us. This was such an interesting and informative discussion and we really appreciate you sharing both your personal and professional knowledge with us.

Meredith:                         Oh, it’s my pleasure. Thank you for asking. And for also helping us get the word out about the work that we’re going to be doing to hopefully answer some of the questions.

Tatum:                              Yeah, well thank you for doing that work cause we’re really excited to, to find out about your results. Speaking of that, do you have any contact information that you’d be willing to share with listeners?

Meredith:                         Yeah my email address is mberger@clarkeschools.org. If people are trying to reach me for the study or for general and some for some reason the spelling of that email address didn’t come through so well the email address I use related to the study is mb4374@columbia.edu.

Tatum:                              We’ll put up both of those in our show notes as well. So listeners, if you want to be sure of how to contact her, go ahead and go to our website to find the show notes. Listeners, we would love to hear from you. So if you’d like to reach out to us, you can find us on Twitter and Instagram. I’m @TatumFritzSLP and Wendy is @WendyDetersSLP.

Wendy:                             You can also email us at podcast@childsvoice.org and you can find episode show notes and archived episodes at our Child’s Voice website, childsvoice.org.

Tatum:                              And if you are 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. No apostrophe. And as always, we release episodes every other week on Wednesdays so be sure to look out for our next episode.

Wendy:                             We’ll see you next time.

Wendy & Tatum:            Bye.

Haley:                                Thanks for listening. We will be taking a short break and episode 20 will be coming back on November 13th. Be sure to join us then. It should be another great discussion. So don’t miss it.

CV Students:                    BYE THANKS FOR LISTENING!