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FEBRUARY 28, 2017, 1:15 p.m. PT

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Parents are parents here?Of course, parents? Excellent. Excellent. I like the makeup here. This is fantastic.Anybody else that we missed? Parent -- well, interventionist, parent ed.I like it. >> We're going to talk today about unilateral hearing loss as well as minimal and

mild bilateral hearing loss. I think this is not a new thing in our profession. And a lot of times you feel like it's

the elephant in the room that no one wants to talk about. But research has been done and we know a lot of things but we still don't really know how to help these children so we're going to try to address that elephant in the room today.

>> So again, where we're from. The University of Miami has several campuses and Kari and I are both located on the medical campus. Miller School of Medicine in that campus we have several medical departments but I'm in the department of pediatrics and Kari is in the Department of Otolaryngology.

Within the department of otolaryngology is full service cradle to graph audiological services and neurological services. We're fortunate within that department to have two kind of sections that are really specifically to our kids with hearing loss. Kari's so we have some special services that we're really appreciative to have. And then the Barton G. kids hear now cochlear implant cochlear resource center which has an array of services for children with cochlear implants. Including the director that is a psychologist. So we have really wonderful resource perspective of accessible pragmatics of families and children. That's a big advantage we have at the university.

>> I'm over in the department of pediatrics so I tease Kari this whole presentation she can get down and dirty with audiology. The Debbie School we have the mission which really is the University of research training and service. We do have an auditory educational program one of the programs at the Debbie school r school where we serve 35 families of children with hearing loss whose families have chosen the Listening and Spoken Language Listening and Spoken Language approach. We have speech pathology services. With the Department of Otolaryngology.

>>Kirsten Coverstone: I thought it would be good to start on hearing and when to treat. It might be easier.

>> KARI: I think all of us would agree that a child with moderate to severe hearing loss you'd do something about it fairly quickly. However, for children who come in your door with unilateral and for the purpose of this talk that includes mild unilateral all the way to single sided deafness or minimal hearing loss it's more gray and we don't always know what to do with these kids. I argue these children are overlooked and underserved and it makes sense in many ways because there's really poor evidence on what if you do something and you do something quickly, that these kids will have better outcomes down the road.

There's guidance if you look at our academy, so my professional society is American academy of audiology and they have very limited guy answer and protocols on what to do and how to manage these children. Peer versus function. They appear to be doing just fine as they sit in your classroom. They're able to adapt. But, when you get down and look at their everyday function in particular environments that are challenging and have high noise, they really are struggling. It's important to recognize that classrooms -- and many of you are in the classroom and this is not news to you. If this is the teacher you have to remember that classrooms are very, very noisy. Children with hearing loss need a signal to noise ratio of 4 to 15db higher than children with normal hearing just to do as well. They're already at a deficit. The classrooms are noisy, you might have an airplane that goes buy, might have a car, a few cars. There's kids on the playground. That's exciting. You've got to look at those kids and they're super noisy. You might have someone mowing their lawn. Air conditioning might be super loud. And you have kids laughing because someone said a funny joke and more kids laughing and chairs moving and shoes on the ground and someone's opening their book and you remember your child is supposed to be focusing on that. The teacher in the room. And even for a child who has normal hearing that's really hard. Then you put a child with unilateral or mild hearing loss and that's going to be that much more difficult. Quick facts about pediatric unilateral hearing loss, about 1 in 1,000 children are born with this. That number goes up significantly when you look at school aged children to about 56 in a thousand. And why is this difference? A lot of research out there looks at this failure based approach that we've taken that we wait until threes kids are failing and do something about it. So maybe that's why they're being caught. When they're a little bit older and that number goes up. Maybe some are progressive. At least a third of children born with hearing loss have unilateral hearing loss. So 30% of our kids.

10% of children with unilateral at birth become bilateral. That's important to recognize because if you're unilateral and become bilateral that impact that much

greater. Like I said before, this is not novel. This research has been here for decades showing these kids struggle. In the '80s, Oleo reasoned colleagues published a paper saying we know these kids are born this way by they'll be fine. Reassure the parents they'll be good despite the fact we know 35% of these kids fail a grade early in their academic arrears and that's 10 times higher than kids who have normal hearing. They were described as underachievers and this is a published apart. They were describes as underachievers, they have difficulty with receptive location due to background noise and localization and this led to personal embarrassment and social exclusion. More recent research shows that children who have greater degrees of hearing loss and Lynn and I see this a lot -- where those children actually do better academically than our kids with mild or unilateral hearing loss because they just kind of get through. They get by and if you have a child, Johnny with profound hearing loss you call his name, that's obvious he's deaf. Versus a child who has hearing in one ear and they're going to respond to their name most of the time. So it's kind of this hidden or invisible disability.

Majority of children don't receive intervention until 5 years of age. Lou and her colleagues from Washington published a neat study looking at children who have normal hearing comparing them -- I'm sorry children with unilateral hearing loss comparing to normal hearing siblings and they found those children are unilateral hearing loss had lower oral language scores. 4.4 times more likely to have an IEP and 2.2 times more likely to been rolled in -- this is a recent study. Beyond the audiogram. We know unilateral hearing loss leads to a reduction in peripheral auditory function. But what's important to recognize is that this does not account for the cascade of disability and adverse outcomes that these children have. You play a sound, he hears it, play a sound he heard it. But we know the deficit is much greater than detection. Detection is one thing that's important but you have to have discrimination, you have to have the ability to identify sounds and be able to comprehend it. And all of those things lead to the ability to have bineural hearing that allows us to separate sounds, integrate sounds and have the ability to have timing cues.

What is bineural hearing do for us? What do these children not have? It gives us the ability to localize sound, discriminate sounds, the ability to release from masking to that cocktail party effect. By neural excel much. This is a busy slide but the take home message on this slide is that our ability to have those bineural cues gives us the ability to localize and more importantly do well in adverse listening conditions. In order for the brain to do that they need timing cues and they're greater for numbers below 1000 hertz and for level cues they're more significant in higher frequencies. We know attenuation from high frequencies from good side to bad side can be between 10-16 decibels and some reports 20 decibels. If you take the phoneme S for example, those children aren't even going hear it because by the time it gets to the other side it's been attenuated because of the head. They're getting inconsistent access to sound. This has lasting impact on social I. actions. I have a little girl who told me no one wants to play with her. I asked her about that because she was a little girl who was outgoing and she came to my clinic and she said we were playing Red Rover and someone was on her bad side and she didn't hear them. What impact does that have on that child's social impact that she thinks her classmates don't like her and what is the long term

impact of that. Is she now not going to pray that at recess because she doesn't have the confidence her friends like her or want her to play? Has impacts on behavior as well as localization.

Again, more of a current look looking at speech and language development in particular, that these kids have inconsistent access to sounds. A lot of this research on children many of you are familiar with it -- shows that the number one predictor for a child's outcomes is the number of words that they hear. The more words, the more language. Christine Shanatango published a study looking at many different factors and what made one kid successful versus not and it didn't have anything to do with social economic status or maternal education. The number one predictor was how many words that child heard.

These children are losing access to high frequency sounds had which we know are critical to speech and language development. Remember what I said before that anything above 1,000 hurts is what these children are getting inconsistent access to: That's a lot of sounds.

>> What's up there.>> We've got actual semantic information up there they might be missing or getting

inconsistently.>> Exactly. >> These children are delayed language compared to normal hearing peers. Lynn

and I hear this a lot that these kids fail a grade. We hear that 30% all the time. But what I think we have to start recognizing is that these children are showing delays as young as 18 months. That they're delayed in their two word utterances so there's clearly something that's happening to these children that is happening before they get into second, third, and fourth grade and are struggling.

So let's talks a little bit about context when you have children that are learning language.

Go ahead. You can raise your hand or yell it out. Tell me what this word means to you.

Some say to see and another actual see and some yesses. Okay. So to me living in Miami, when I first saw it this said yes but to someone else it could be anything you just mentioned and it's important to understand that our children do not have a base of language. They have no -- they're learning language. For an adult we can use context. Did they say they were going to the sea or did they see their friend. They can use context to fill in the gaps where children with unilateral hearing loss can't do that. So these are words any kindergarten student would know. Sure your child might hear plane every once in a while but they're not going to hear it consistently. They're definitely going to struggle as Lynn mentioned with that bars versus bar. We see many children in our clinic that are just there to learn how to use plurals correctly. Because they don't hear it properly. We know incidentals, learning is crucial. So what if that good ear is covered? In the car street and stroller and breast feeding so now you have a child who is bilaterally deaf. If there's no aid on the other ear. When you're holding a baby you have a lot on your plate, is it one ear, both ears up, should I only breast feed on the right side and you're whispering to your baby, goals and dreams for your child and they're missing a lot of that. Speech at a distance, soft speech. This is a little girl

of hours who has unilateral hearing loss and she got a Baha at four weeks old here. >> We'll dive into a case. This is 6-year-old MiA. she arrived at aiming 5. History

of right single sided deafness secondary to bacterial meningitis. Shh is her audiogram. You can see the left ear, normal hearing in the right ear, severe to profound or profound hearing loss. Sensorineural. We enrolled her and we did an entire single sided deafness evaluation which for us consisted of many measures one of which is doing the BKB sin a speech and noise test and uses sentences and looks at signal to noise ratio from plus 21 down to negative 6 and gives you an SNR loss or SNR50 which means the signal to noise ratio that child needs in order to do just as well as a child who has normal hearing. You can see the graph on the right. Anything that is Mia was set up in the 92-70 meaning the speech was going to her bad side and noise going to the good side. The most difficult decision this child would be in. Unaided she had a moderate loss meaning she needed the signal 10.5db louder to do just as well as normal hearing child. Aiden did much better but still not within normal with both the bone conduction device as well as cross.

Mom said everything was looking great and doing data logging. She got a gold star, wearing it eight hours a day. That's awesome. But mom said she had slurred speech and that she was asking for more repetition especially when there was soft speech or no visual cues. Mia is a rock star. Very compliant little girl. Perfectionist, straight A student so that was a bis concerning. So we did more testing in the booth. We put the bone conduction on her right side bad side and plugged the left ear and we tested her with words looking at soft, medium and loud and soft and medium she got nothing correct. At louder she got 100% of the words correct. We of course assumed the device wasn't working had nothing to do with us or the child. So we sent it back in and still the same results. No improvement. So we figured Okay. Well something's not adding up. What's going on. Why is she not performing as expected? She underwent an ABR and again was a very compliant little girl so we didn't really think this was all that necessary. But we just wanted to cross-check just to confirm the left ear was truly normal and that bone conduction was truly sensorineural.

ABR results, they were consistent with the hearing test. However, she had this weird residual hearing in that bad ear at 500 hurts so she was coming at -- her bone conduction was 35.

So we tested her again and you can see on the side they repeated everything two times and got the same results and you can see that she has this residual hearing in the bad ear. Which we weren't seeing before. We did more testing all the children in our SSE clinic do receive questionnaires because it's important to recognize that most of these kids are going to do -- they're going to reach the ceiling on these questionnaires because they're designed for children who have bilateral hearing loss. She did have some localization. We put on localization booth. We're fortunate to have one. And she was able to localize, which made us confident that she did have some residual low frequency hearing because, if she didn't, she would not have any ability to localize.

She underwent educational review by myself as audiologist. And what I found was surprising. Mom had never disclosed anything to me and what I read was Mia is easily frustrated due to her hearing loss. She becomes overwhelmed and engages in

self-injurious behavior, she doesn't ask for assistance when she's overwhelmed. That was pretty upsetting when I saw that and had a conversation with mom and referred her to our deaf educator.

We're lucky that we have a deaf educator on our team and alynn said also a psychologist. The deaf educator went through the IEP in great detail and mom didn't see any concerns about Mia's behavior and that was the first she heard about this that she didn't realize that was on the IEP. Say lot of time was spent educating and empowering mom to ensure that Mia is able to advocate for herself and a lot of time was just spent doing that as well as referred her to our psychologist. Mia is a perfectionist. In many ways she was wearing the bone conduction device but getting distortion and that was resulting in frustration because a typical child having hearing loss shouldn't be having these behaviors. She was referred to pediatric anxiety clinic and that's because we want her to figure out how to manage her anxiety so when she gets older and life gets much harder she's able to manage that. Collaboration was obviously very key to her success. Looking deeper, Mia is now six years old, we tested her in a bunch of different conditions. Unaided bone conduction device only. We looked at the bone conduction device plus FM and we also tested her with an FM receiver on the good ear. What we saw was when we tested her unaided in a plus 10 so a fairly easy signal to noise ratio she got about 40% of the words correct. In a more difficult listening environment but probably more typical of a classroom plus 5 signal to noise ratio she got about 10% of the words correct. Looking at bone conduction only she did better still not within normal. She got 70% of the words correct in a difficult condition she got 50% of the words correct. When we tested her with bone conduction plus FM you would think that would be better. There was no change. She got 60% and 40% in the+ 5 and then FM in the good ear she got 100% at plus 10 and 80% at plus 5. And of the things we think based on testing is that she was truly getting distortion from that bad side on residual hearing. I was taking that to the good side. Subjective reports were so important. Mom came in and said she had slurred speech. These aren't things you can get in a questionnaire for a wild who has unilateral hearing loss. Bone conduction got her into intervention. Whether it's the right choice for every child or this specific child, it got her wearing something and mom on board of impact of unilateral hearing loss. Speech testing went crucial. You can't just put a device on a child. You have to do testing. That published report by Oler and colleagues looking at kids saying they're underachievers, I would actually argue that Mia and a lot of our kids are overachievers. These children are going a long time, Mia for example was five years old and having to figure out ways to adapt and work harder than a child who has normal hearing. Just some discussion points. Obviously parent and child involvement are crucial. It's important to do outcome measures and it's important for families to understand the impact of unilateral hearing loss. Everyone has to be on the same page. Mom can't come to me and hear that unilateral hearing loss will have an impact and then go to the Debbie School and hear something different or go see a physician and tell them something different because parents are always going to hold on to the one provider that told them everything is going to be okay.

Bone conduction device is a gateway for many children to get early intervention obviously these are single sided deafness and you can always discuss other options as

they get older. This idea of conventional hearing aid versus cross is a constant debate on children who are SSD. We'll see more research and we're seeing this in the international community looking at CI in children who have single sided deafness and I'm excited about that. You have to remember a lot of these kids have ear infections in the good ear so that's important to remember because now they have a bilateral hearing loss and in many ways wireless accessories have been a game changer for our kids. They're super excited they can have things wirelessly and no one has to see they're listening to music and that's creating excitement in our older kids with unilateral hearing loss.

>> So I think Kari really demonstrated how you have to put it all together and beyond what we might typically use to evaluate and say that a child is in need of a device or of education, that's where we want to look at the pieces of the puzzle thinking about often it's easier in early intervention with a child with unilateral hearing loss to build an IFSP around that parent education and monitoring. But then we need to show there's an educational impact. We want to look at four areas. When we look at Mia, she was chugging along making it happen for herself. She was learning. Was she having an developmental or academic impact? Nothing that we could demonstrate. Communication impact maybe we had articulation issues. With you would those have been enough to really justify for an IEP team to write goals? If we look at independent functioning if we look at social skills, that anxiety piece, her ability to manage her day with her peers and manage her anxiety. Those are areas that have a very strong educational impact so we want to look at all the pieces of our children to make sure that we're covering it within their educational program.

>> Jumping into minimal bilateral hearing loss.>> Are there any questions? Sorry we're being very presenter here. Any questions

about that case or, you know, laterality specifically before we can come back to it of course.

>> Would you teach social skills or self-advocacy.>> The question is would we approach that self-advocacy self-determination skill

set differently with the child with unilateral hearing loss versus one with bilateral more severe hearing loss? I would take it within their need just as I would with any student. So her needs are going to be a little bit different. There might be more of a positioning aspect to how she is -- has her self-preservation, what she tells her friends about her devices and her skills. So I would approach the same set but within the needs of that child.

>> AUDIENCE MEMBER: (off mic).>> The question was about technology as gateway for early intervention. Do you

want to address that? I think what you're referring to was that that was the step (lost audio) Okay. Hi, Darlene,

>> Darlene (Writer): I'm back.Yep, Skype dropped.Sorry about that.So yeah, so minimal bilateral hearing loss. So again, there's a good consensus

and what we should be doing for children who have moderate or worse bilateral hearing loss and as with talked about for children who have unilateral hearing loss, the

protocols are just less established. And I think everyone's definition in each state of the eligibility is probably different which also can result in issues and I don't know if you want to mention anything about eligibility.

>> I was too busy causing distortion and masking. The eligibility again each of you know the eligibility within your state. I know in Florida we can cover these kids. We can make them eligible for hearing loss. Are there any states that are particularly strict? In gem we qualify our 25db kids and unilateral kids. I hope other states are the same. Good to be aware of.

>> Definitions Beth and colleagues recommended this. If you look at more current literature, it's consistent with what these definitions were. So permanent mild bilateral hearing loss is a PTA of 500-hertz, 1,000 and 2000. Between 20-40db in both ears and permanent high frequency hearing loss of ear conduction thresholds have to be greater than 25db at two or more frequencies above 2000-hertz. Quick thoughts about minimal bilateral hearing loss. .16 in a thousand newborns are born with this type of hearing loss. 15 in a thousand of school aged children. There's a potential of increase because a lot of children are missed in the way that we test them for newborn hearing screening. Some have a loss to follow-up and many of them are born with normal hearing and progress to have some sort of hearing loss. Etiology for these children varies quite a bit from genetic to ANSD to prematurity. Joint commission on infant hearing recommends enrolling children as Lynn said. What if they don't qualify when they're very young? I know we've talked to different states who it's difficult to get these kids to qualify for different services because they're not struggling just yet.

Back to that failure-based approach. There's a significant portion of these children that have been found to have academic difficulties. They have difficulties under a controlled laboratory condition. Parents and teachers report that these children have difficulties. And also by children themselves.

The clinical decisions can be quite difficult. There's an uncertainty on what to do with these kids and when to do it despite early identification.

Do you aid or do you not aid? What is the impact on the child's education on school age. You don't know that. Irregularities with ear canal. I have many kids I question am I doing more harm by good by putting an ear mold that's supposed to be open but, if any of you have seen a child open ear mold, it's not so open. There's just not enough to work with and the ear canal is so small even if you put a large vent it's not very open and domes in a child is just not appropriate. We test these children for occlusion and I'm happy to meet with anyone to talk about that especially if you're not in the audiology field just to make sure these ear molds aren't occluding. If they are, we document it and monitor it closely and then we also measure the noise floor of the hearing aid. There's been reported work looking at these children the noise floor of the hearing aid is actually higher than what their threshold so they're hearing that noise which distorts the clarity of speech. So things to think about.

We'll dive into a case. This is a little girl that we see. She arrived at our clinic at three weeks. She failed the newborn hearing screening bilaterally. She was born full term. Did say in the NICU for three days and came to us with an ABR that said she had a profound hearing loss bilaterally. Unfortunately we were not able to obtain the wave forms. Mild hearing loss 35db at 2000-hertz and 4,000-hertz. Based on definitions

published by Beth, she did meet that criteria for mild hearing loss bilaterally. She had absent OEEs despite the fact they had normal hearing OEEs were absent and that was repeated and she had present ipsilateral acoustic reflexes bilaterally. At that point we referred her to EMT.

We're lucky we have five neuro otologists in our practice so they can go see the OT the same day. He recommended a repeat in three months. Genetic evaluation and hearing aid evaluation and family at this point chose to wait and see. They weren't convinced. Lynn and her group did meet with the family gave the family information about an early intervention family group and mom did attend that.

She had an ABR repeated at six months of age and this was consistent with what was gotten previously. We talked about the importance of getting behavioral testing. I think this was crucial in these children who have borderline questionable hearing losses to ensure when you put them in the booth they're hearing is consistent with the ABR. At that time they reported that Victoria was responding. Mom and dad both said she's responding to sound and babbling and that she loves music.

We gave questionnaires. She was right where she should be. Ages and sieges looks at a bunch of different domains, not just communication, also motor and things of that nature. Everything was great. Lynn and I have talked about this before. For these families perception versus reality. This mom was the type of mom who if you ask her a question she's always going to give you what you want to hear so we always had that doubt that that's what mom was doing on that questionnaire. We took it with a grain of salt. We said she's in your arms and close to you in a coyote environment but when she gets older and walking in louder environments. What impact does that have.

In our conversations I know all of you who work with families when we're working with families and trying to help them understand the impacts of a very minimal hearing loss, there's tools that we can use with them, help them make sense of this. Because again even sitting in the booth while the baby is being tested the sounds are quiet even to the adult. How do we help them understand the impact. Like Kari said as they're starting to crawl and get farther away from mom's source. A tool that we like to use is the early listening function. Karen Anderson developed this. It's a nice functional listening evaluation pretty typically do it at home. It has a skills that are chunked into quiet, normal and loud so something quiet might be this rubbing your hands together. Louder might be dad calling the baby but we can grasp the baby's responses to this at different distances. So again it helps the parents understand yeah, she's responding great to when you call her when you're three feet away about if you're six feet away it's not so quick. Think about normal home life. She's going to be calling her from the other room. And it gives us that opportunity in kind of a systematic way to demonstrate those skills with parents. It tucks about introducing noise and if we turn the TV on and do the same skill sets, can the baby respond? I think that's something we do this sometimes as part of our parent groups or in our home visits. It helps the families and in this case I think that did help the mother understand a little bit that impact of this hearing loss that wasn't really all that apparent in day-to-day life of an infant.

These same thing those familiar with the NAIS and things similar. Kids generally do well on these inventories. Do they respond to their name. Are they -- if they have hearing aids, are they paring those devices? I think the L drove down more to that

distance and the different degrees of loudness. That listening bubble that the kids have available to them. I just have to commend Kari as an audiologist for having the parents sit down and fill out ab ages and stages in her office. I think it demonstrates that Kari is really looking at the whole child. I think it gives students -- giving you the opportunity when maybe another area of development might be a red flag that the parent hadn't realized that Kari is able to make referral earlier. Team is looking at the whole child. But it does help with communication piece.

>> As the child gets older what's going to happen to the environment? As I said before, environments are going to change greatly. One of the things we'll do in our clinic is use the data logging feature. Do any audiologists or anyone in the room use this to counsel parents? One of my favorites other than the fact you can call them out when they're not wearing them, sometimes we'll hear can you check this. I don't think they're wearing them. One of the tools is it tells you the loudness levels that she's in.

And what we saw is that she was in -- at this age she was in a very soft level. So able to show mom a graph and say 50% of her world is in very quiet environments. But when she goes to the Debbie School, it's not going to be quiet. And she -- should this graph is going to move more to this end. So that I think was a good way to show mom. We brought her in for behavioral testing. BT did not want to participate. She cried for the duration of the appointment. She unfortunately were not able to get ear specific information. We were able to get an audiogram showing she had mild to moderate hearing loss in one ear and absent OEs and this was consistent with her ABR. It's not ear specific but it was something. We did fit her with hearing aids at 7 months. So not quite within the 1, 3, 6. But that was because the parents were getting on board and we felt that was an important component to manage. She had a hearing aid fitting at 8 months. The report and feedback she's doing well. Without the hearing aid, mom. Look, she hears and she would show me look, let me show you and she would play a sound and she would turn and she's right in a quiet environment she does hear. Data logging in her environment. She was referred for genetic evaluation, all of our kids have the option to get a genetic evaluation, that's completely up to the family. It was negative for connection 26. Cardiologist did have suspicions of long QT. She had MYH14 variance associated with hearing loss on mild to moderate side which can be progressive and we found this genus highly expressed in mouse cochlea and we recommended parents get hearing evaluation we saw a change in mom's buy-in. She was able to say my child has hearing loss and it looks like there's a reason. A light bulb went off. As I mentioned she cried whether we saw her at six months of age. We're persistent and we kept bringing her in and did behavioral testing. Or not.

BT was not happy, she cried and cried and cried and audiologists cried and cried. Looks pretty good. We were able to get ear specific which was quite an accomplishment.

In the right ear. Once you start seeing dots on an audiogram it is a bad day. Left ear is lots of dots. Right ear kind of sort of.

This is bringing her back constantly. At this point we called our friends at the Debbie School. Came to our rescue.

>> She started in our home base program and started in our center base program and was great and speech language pathologist and we just can't understand the child

that they're seeing over in the audiology booth because we had a completely different child at it's teaming that made a difference. Next slide talks about collaboration. We have SLP working together. There's a booth in close proximity to classrooms. Teachers will take little field trips and get the kids used to the booth which is a great advantage we have. We have fourth year AUD students who work at the Debbie School and can help at the ear institute.

>> She did work with her also and so we're really -- it's this weird environment in the booth. We know that but we want to work developmentally and really help her help us help her. So again, it's really this team. And really working with mom. She's right. She's stubborn but she's smart. She is her own little person and mom recognizes that and she sees that she's doing very, very well. Bilingual. She speaks more Spanish at home and English at school. We recognize that but we want to get good audiogram so we can optimally amplify her. So it is really truly a team. We're fortunate I know probably not all of you have access to this full team. But when you have these challenges, think about who you can call, who said that one extra thing that you might be able to pull in or one extra person to pull into complete your picture and enable this to happen. Are we really looking at everything? Are we looking at the fact that she Dr. a rich language environment at home and in school? I think she's studies where they're comparing a child with their typically hearing sibling I really wish we could see more of that kind of evaluation on a day-to-day basis. Because are we setting the bar too low? If we're getting a test that's within normal limits at 89 or 9 one, is that really -- 91, is that maximizing the potential of this child? And the only way we really know is within that child's environment. We know she had a very rich language environment. I would expect her to have standardized scores at well over 100. Are we setting the bar too low? But we did see some delays in her -- at her age conversational -- her spontaneous use of two word utterances in this case. So we have to look at those. We're looking at communication, generally developmentally we weren't seeing any delays. We were seeing her PLS was 92. But wasn't applying functionally the way we would expect. Independent functioning she's pretty independent, her social skills were developing but that was a process. We're going behind the audiogram, behind Xs and Os. For all of our kids with this mild level, mild minimal hearing loss, we've got to look at home and classroom function. Social skills, their self-esteem. Self-advocacy. We're looking at articulation but moving that into awareness and academic skills later on and of course language and vocabulary and doing that through standardized testing. We can use functional listening evaluation which is an imitation test. It's meant to be delivered in the classroom setting or in the child's academic setting. Not with the whole class there so it's not quite the full range of that classroom that Kari showed earlier. The environment including that air conditioner. We are looking -- go ahead. With the functional listening evaluation, we're looking at how imitation in this case is impacted by the environment. Usually common phrases and we can add in noise, take out the visual information and we can add distance, noise, again we can take out visual. We can also add in an FM system. This tool is invaluable for demonstrating that educational impact. So again, you have a child who's well-aided with minimal hearing loss, well aided. They look like they're doing great in the classroom but they're not. Let's demonstrate this imitation test at a distance with noise. Their ability to imitate

goes down, we add in the FM, it comes back up. Then we can go to our IEP team and demonstrate the need for that FM system. So the functional listening evaluation is a great tool for that. And some inventories, the child's filling out a little older or that the family -- so again, let's look at that social skill puzzle piece. There's a lot of tools for us and these are tools that are available for any child, not tools specific for kids with hearing loss although there are some for social skills that are available specifically for kids with hearing loss as well.

At the Debbie School we use primarily the social sections of either the learning accomplishments profile or the early learning accomplishment profile but we always add in the DECA, the Debbie early childhood assessment. Feedback from teachers has been that items on that are really getting at the kids ability to initiate with peers. It's supposed to help us look at subtler aspects of minimal and moderate hearing loss. The B ASK is a great tool that has specific self-support for older children. It gets at really specific areas with aggression, anxiety, which is I think a bigger area for these kids and again you can just -- this can be used with our kids with unilateral hearing loss or bilateral or just no hearing loss at all if you need it. These tools can again help us establish a child's need for support within their environment.

A great curriculum was steps to success. I know we're on our last five minutes so I'm going to stop in case we have questions. I do have samples of this. This gives you goals for self-advocacy and self-determination. Starts at kindergarten and I looked at kindergarten goals and brought them down even for preschool kids. Think of your puzzle piece. That's really the take home on that. I want you to show your.

>> One of the things we'll do where our kids is we'll ask them to draw a picture so we'll say if your hearing loss is sitting on that chair next to you, what does it look like with and without your hearing aid on. And we'll do many things like this where the child has to be engaged because it's really lard to ask a child do you like your hearing aid? Do they help you hear? A lot of them say yes or have no idea what you're asking them or it's a hard thing for them to grasp but every child has a really good imagination. And so this is a little boy who had mild hearing loss. Bilaterally he drew this picture and I said what is this? I said this is how I feel without my hearing aids on. He said well someone's driving this truck and that's him chasing the truck and he's trying to catch the truck. Okay. Is where are we going here? He drew another picture with hearing aids on and he's so confidently said like what's this?

Well, duh, I'm the one driving the car and I'm going over everyone because I can conquer the world.

And I was like oh, obviously, obviously. We wanted to put this in there. Thinking outside the box. That was profound for mom to see her child was saying this and he was a child who had mild hearing loss and loves his hearing aids, does not take them off and he did not get hearing aids until he was 7 because he went to multiple places and they told him he was fine and everything would be good so I it's good to think outside the box and get creative with these kids and that's it.

(Applause.)>> Does anyone have questions or wants to see any materials -- at 25 bilateral and

40db for unilateral.>> For unilateral. It's 50db.

Yeah. But we have some legislation going in now but they're changing that.>> They're looking at the rule and trying to get it to 20.>> Yeah.>> Yeah.Yeah. So we do. I do it a lot for the minimal and mild. What's hard and Debbie

and I were talking about this. I do this for parents or when I'm in the school. I'll have the teachers or the parents plug both ears and then I will give them a spelling test or Lynn said she sometimes will give them a passage that doesn't have context or meaning to them.

And I'll say wasn't that hard and I'll have them unplug that one ear and then do it again and a lot of times they will hear it. So that generates a different conversation. Let me talk about that. So your child sometimes will hear and I understand why that can be hard for you to understand and talk about that inconsistency. And then what we're trying to do is get, like, a -- to put noise even in our counseling rooms so we can plug that one ear and put noise.

Yeah.But we always have them in the parents inside the booth when we do the testing.

Yeah.We will see the kid and they'll get medical clearance per FDA guidelines but I'll be

honest with you. We're very fortunate that we have a very good relationship so we'll walk forward and say look at this, child needs hearing aids, tell mom. So mom's getting the message from me as audiologist and now someone else as ENT clinician.

So he's not the one who says yes or no.He'll write a medical clearance for us. Good question. >> We're happy to stay around if anyone has more questions.. **

>> Darlene (Writer): Okay. Thanks... >> Good afternoon, everyone.You have been welcomed to understanding the impact of early language

development on achieving school readiness and school emotional social emotional well being.

>> GINA CATALANO: My name is Gina. Can everybody hear me? Am I talking loud enough? Can everybody hear me? I'm Gina. And I am a certified deaf ed and special ed teacher. I've been in the school system for the past 15 or more years. Within the last five years I decided to do a career change and I wanted to become an interpreter. So I completed the sign language interpreting program here in Atlanta, George State University. I was an educational interpreter at the school system for the last four years, right now I am in school for my master's degree and I'm actually studying community development and leadership and this is what my presentation is about based on my experience.

As you can see, obviously this is the EHDI conference and I'm going it make the assumption that most of you know what that is. It's a federal law that mandates that babies need to be tested, hearing levels need to be tested at birth for some time between that date. Soy pulled this off the Internet, the American academy of pediatrics across the United States implemented differently. They have different goals and I thought it was fascinating that the AAP, these are their goals for the EHDI.

As you can see, it's very important they take it seriously. And I'm glad to see that. From my experience of being a teacher and also an interpreter, I noticed that the

current trend right now tends to be babies identify important implants are recommended or hearing aids are recommended. There's some type of technology assistance that's needed. And what happens and becomes very popular, they noticed that the earlier the babies are implanted with a cochlear implant, the better chance they have of being able to -- I'm not sure the exact wording they use but the earlier they can start hearing or using hearing ability with the assistance, better chance they have of acquiring or picking up language. The goal is we want these children that are identified with the hearing loss we want them to be able to hear as much as possible so we know it's a very good benefit.

Parents are encouraged often times usually with listening, speaking skills, sign language I've noticed -- this is my personal observation -- it tends to not go hand in hand. It's either we teach the baby for sign language and that tends to be if a child is born to a deaf family and dev people already know sign language and that's their native language. But 90% of children with a hearing loss are born to parents that have no hearing and in the deaf community we call it hearing people and deaf people. They have a hearing family but -- so the family is devastated they want their child to be able to hear. Often times they're being considered for cochlear implant doctors say don't sign because we want to focus on developing that listening skills and get used to using what they have.

Often times the way it's presented the parents are very overwhelmed. I have a video I'm going show you a little later and they're going to say Okay. Of course they're going to take the doctor's opinion, they're the expert. Side note usually appropriate implant is recommended for a child usual that I means that they have to have a certain amount of hearing loss I wear hearing aids myself. But I'm successful because I have enough residual hearing that with hearing aids I hear very well and talk very well. Usually cochlear implants are for babies that have a more significant hearing loss and

hearing aids cannot help them. I just wanted to make distinction. Often times the appropriate cochlear implant function as well as someone hearing.

Usually the parents feel like Okay. I have to pick, I have to have cochlear implants and I'm not sure that -- it does put my hearing aids in. However, it's not guaranteed to be successful.

It's not always successful. And I taught 3-year-olds in a deaf ed setting and it was interpreter. And often times I would see children at the age of 3, 4 and 5.

That had had cochlear implants and for whatever reason this wasn't successful. They weren't talking or just not responding to therapists. Whatever it was. But by the time they came to me, my -- they're 3, 4, and 5, sometimes even 6 and 7, they have no language. My concern is that by then that acquisition period is so critical. And my whole point is that it's not always guaranteed (.

>> Darlene (Writer): Sound is cutting in and out) I wanted to present there's another way maybe that because we have so many people, so many hearing babies, so many students that haven't identified hearing loss that I'm seeing all the way up to high school years. They cannot catch up. They're socially emotionally not doing very well. Placed in special ed. This is just information. If you go online, there's a lot of information about older deaf adults who were fitted with cochleares and chose not to wear them. There's a lot of different reasons, one explained that his parents were not aware of the amount because that was -- they couldn't afford it or have the transportation so the cochlear implant wasn't successful to him that's a personal connection to some people that cochlear implants are not -- the video I have is early intervention wanted to tell a personal story. I was in the sign language interpreting program as I mentioned and one of my classmates was president I remember one day she may have been a little bit at a wreck and she was -- we have miracle ear drops and you drop them in the ears you could automatically hear again, I would take those in a heartbeat. My point was that her point of view was that I'm hearing, I'm not deaf.

I don't know sign language, I don't know deaf culture. I'm learning it in school.So don't get down on those parents that want those -- their children to learn how to

hear. My solution was to present a solution but often times there's a deaf people will be quick to tell you I'm okay with not hearing. Other deaf people will say I feel like any time a baby is born with hearing loss their perception is we have to fix them. We've got to fix their ears, they have to hear. So there is some tension between the medical community and the deaf community.

So my solution that I wanted to present to you was this. I found this video on YouTube. Short seven minute video.

And it's captioned. >> My solution. I hope you enjoyed the video. It presents a different perspective.

As I said, with my friend, this is intended to, with an understanding that it's understandable that if your child is born with identified -- I love the language. Identified sound and your hearing levels are different, it's a more positive approach with the parent. And I feel that the parents -- it is very overwhelming. They don't know what to do. But, if the language is changed then the parent -- it will have a different outcome because over all my goal is that these babies have got to have language acquisition. Whether it's cochlear implants, whether it's sign language, whether it's -- should be

involved with those and often times if you just pick one, you don't know if it's going to be successful. And that's what the -- that's the missing link for me is that we don't know. So instead of just picking one, you have all these communication options that the parents can choose from and they can be interchangeable. You can try this. That's not working. Let's try that. But I feel like they shouldn't really -- and the approach is what I call this and it's asset based, the A and the B, asset based community development.

And basically what it is that the -- it's very simple. And instead of it being an approach as she was saying to where oh, no, outside people are coming in to work with the parents early intervention team, you know, we're the experts. We need to tell you what to do, but she said early involvement, what it is that it looks at the baby that's identified as being deaf. Looks at them as the community. Who is their community? And the community is doctors, audiologists. Childcare providers, all the community members get together and you look at the asset, the A, asset based. What can we do, what can this baby offer? What does everybody here have to offer so that we can work together to get this baby the language acquisition that they need? And that's the idea behind asset based who dealt it? I would love to see that. I would love to see the video that's she's shown. I would love to see a baby has been identified as deaf. I would love to see the language change in the hospital. I would love to see a deaf person or several different deaf people coming to meet the parents. I would love everybody working together with that child. I would love to see the child celebrated and not the parents rally overwhelmed by oh, no something is wrong with my child. It starts here. That is my teacher and professional and if you wanted more information about the ABCD approach, that's her Web site.

And so what I have done -- this is in closing -- just a few more minutes.So the steps to the ABCD approach would be like I shared, map your assets. You

nine out who is in the community and what are the assets that they have.And then your goal is to build relationships.And you want to problem solve baby being identified as deaf is not necessarily the

problem for me. The problem is the access to the language that that baby is going to get during those critical years from birth to 5. That's the critical point where that baby is and you just keep on going the third step is that you just information share, you work together, find out what is needed. And fourth step is community gets together and write a vision. They write a vision and map out the plan to see how this would work. And then after they have all of this figured out, then they go to out I'd used resources to come and help. The whole goal is early involvement. You're focusing on the positives of the baby being identified as deaf, the positive of the deaf community. The positive what the medical field has to offer. Positives of cochlear implants, positives of hearing aids, the positives of audiologists and education. And you get together and you work together.

I wrote down community. Deaf, hard of hearing members. Anyone with a hearing loss basically parent siblings, friends, family, doctors, cardiologists, educators. Anyone who wishes to be part of the community interpreters. I did not put interpreters in my slide.

But in closing, that's my presentation. My goal was to present to people here at this conference a different approach when a baby is identified with a different hearing level

or identified as deaf and how we can strive to close that gap that by the time they're age 5 or even 3 if they're school ready they have the language that they need and we can figure out what we need to work together to get that language access that people need.

That's my presentation.I was curious are there any parents here, parents -- Okay. So I hope that this

speaks to you.I don't know if you could identify with the experience of the woman in the video.

Educators, deaf ed teachers, early intervention specialists. Audiologists. Therapists. I've worked with all of you guys in the school system. Is there any questions? I think I have a couple minutes. Please fill out the forms and make sure you hand it to her before you leave. Questions? Have I what? I'm sorry, one more time. You know what? Gotcha. Okay.

That's a greet idea it never even occurred to me. Do you have any suggestions of what you would -- okay. the question was have you suggested that EHDI change their name? That was the question. That is a fantastic -- do you have any suggestions as far as why you would want that or why you don't particularly prefer that one?

>> AUDIENCE MEMBER: (off mic). >> GINA CATALANO: Drop the H, change the D to deaf and I to involvement and

have it called early deaf involvement. I love it.I love it.The positive language. I love it. Do you have other questions? Parents, are you

here in Atlanta or in a different state. Washington State. I don't know the answer to that. But I would be willing to help you find the answer to that.

If I was in that situation for me, first thing I would do is go to the deaf school but I'm not sure how far away it is to you. I would try to contact them. I know Washington State has a deaf school. He goes there.

And -- and oh, okay. They haven't been able to -- have you asked them that question or as far as sort of -- gotcha, I gotcha.

Personally, I commend you for learning sign language.I commend you.And what you're doing is great. I would -- me as a person who worked with babies

that were developmentally -- I have a lot of suggestions but I'm out of time. Is 12 possible that we can -- is it possible that we can talk? Okay. Were there any other questions? Okay. Thank you so much for coming to hear my presentation.

. * >> Good afternoon, everyone, welcome to otolaryngology and EHDI outreach and

collaboration. >> Last session. You guys hanging out in the back? We're going to keep it casual,

right? All low key, nothing too strenuous. But thank you for staying and coming to the presentation.

So I'm Kirsten Coverstone. Audiologist at the Department of Health in Minnesota. I'm an EHDI coordinator from the screening to diagnosis part of our program. I am

privileged to have Melanie Wege who is audiologist as well and she's at our Department of Health and screening diagnosis. We are fortunate program, I know. No comment apted we're also privileged to have Abby Meyer who is a key part of our advisory committee and we are excited to have her. Full disclosures, we don't have any financial disclosures. Rats. So quickly kind of overview we've saved you in the abstract. But quick background on identifying improvement opportunities with the ENT community. Some of the methods we use to promote EHDI best practices specifically for the otolaryngology community. Evaluating outcomes. We're all rock stars on that. Investigating the etiology, supporting follow-up. Gentrification here.

Medical surgical options for.But I promise when you leave, you will have something to take home that you can

do. So wait until the end. >> MELANIE WEGE: I'm Melanie Wege. I'm an audiologist with the Minnesota

EHDI program. Are you all hearing me okay in the back? Using this microphone? I'll try to be a little closer, better? Thank you.

Just to provide a little background on this, in 2009, as we were doing case follow-up in Minnesota we often get a copy of the dictated visit notes along with our standard data gets reported to us. What we were finding is kind of this circle of care providers with different recommendations when middle ear fluid was involved in particular. Where they were seen for their initial outpatient follow-up visit. Also saw otolaryngology on the same date and middle ear fluid. Otolaryngologists may have recommended this to ABR in many cases oat laryngologists wanted to continue following fluid until that cleared and present with an ABR. Real conflicting recommendations at that point. That was very confusing for families. What we were finding is 7% follow-up cases had history of screens. And so we started by making some initial calls to primary care physicians and discussed some of the critical timelines that we typically encourage families to complete the diagnosis on time. And in cases where the oat laryngologists have already recommended a delay in the process, primary care physician was often very willing to make a change in that. They just didn't do it. Just a little confuse caused by that community.

We proceeded on and made calls to the oat laryngologists. Some were very awkward in the beginning. The otolaryngology community was not used to getting a cold call from the Department of Health whereas, primary care is used to getting calls from some of the other blood clot disorders and having a close interaction with us. This was very different for the otolaryngology team. We hadn't talked -- it really revealed gaps in knowledge for some practices just a lack of understanding that that connection it is feasible and accurate at a very early age and qualified audiologist and also that get these babies into the clinic early enough that we can complete ADRs and they do not finish because they can't afford it. So these prompted us to see more systematic level rather than making individual phone calls where they weren't maybe necessarily impacting a changing process. Some first outreach efforts on a system-wide level was to create a flyer kind of focusing on middle ear fluid and still making direct referral for ABR if the baby still was not passing cousins and designed this flyer and had this present on the registration table. Unfortunately we were not IBM to have that placed directly in each attendees packet and in this and this wasn't picked up by very many

people. Out of 50 attendees, they actually picked up the packet so this is a big fail for us. In 2012 NCHAM sent out a nationwide survey that went not only to otolaryngologists but primary care physicians nationwide in just surveyed attitudes and knowledge about EHDI. And the result of this was able to be pulled out by state and by providers. So we were able to separate responses from the otolaryngology communities specifically.

And it really validated what we had already suspected that there really was a need to be promoting the importance of EHDI and background knowledge to the otolaryngology community. What the NCHAM study was showing was that they were not mediate trick in nature and infants was not a large part of their practice and may not be fully aware --  59% understood that it should be retested by one month.

And 34% felt that a unilateral hearing loss would not impact language development. So there was room for improving the knowledge base. We proceeded on to develop new educational materials. I don't have copies of these here with me today. But these are all posted on a Web site which is at the very end of the presentation and so I'd encourage you to take a look at those, access those and use those to inspire some development.

And so one of the first things that we developed was a guideline for otolaryngologists and this had three primary sections to it. The first focusing on the important timing of events during the hearing screening follow-up.

It also included a section on investigation etiologies and some of the follow-up processes that happened after diagnosis of permanent hearing loss.

And then the third section focused more on long term monitoring for risk factors so those with -- on the right side, greenish blue color we also developed an info graphic again providing some of the data background information that we were able to pull from our program specifically and just be able to use that data to again further support some of the recommendations.

That might be needed -- Kirsten pointed out both of these documents were developed in very close collaboration with our otolaryngology advisory committee members of which Dr. (saying name) is a part of and that really provided us with some really, really good guidance and insight into the information that would be most helpful for the otolaryngology community. So this additional piece was a two-sided piece that included a specific flow chart again highlighting the important timing of our 1-6 guidelines and then some additional myths and facts just described important information that we felt there would be gaps.

We also were able to submit some newsletter segments to the Minnesota academy of otolaryngology newsletter. Again, all of this what not be possible without the input from our otolaryngology advisory committee members.

Copies of some of these new print materials were actually mailed out to the various otolaryngology clinics.

And then again we also had the assistance of our advisory committee ENT members to promote and discuss these documents with their colleagues. And get additional feedback for continued developed and feedback so we were able to post all of these documents again -- this is an example of our Minnesota academy of otolaryngology meeting although our first attempt at disseminating information at that

meeting on the registration table was successful in subsequent years we were actually eager to register to have the booth where we had really good insightful discussions. Feedback directly from the otolaryngology community that really helped our future development and Bob has some of these documents.

So after several years of having this great conversation, and trying to disseminate some of this information and fill in some of the gaps that we had identified, we really wanted a way to identify if we were making a difference. And if with were able to find improvements in some of those knowledge gaps. Brave so going back to the 2012NCHAM survey, we were able to pull out key questions that focused on the EU1, 3, 6 guide lines and able to send that out via email and hard copy. We actually had an equal response wait for -- response rate for both method of disseminating that and then also followed up with a second email reminder but most of the responses actually came in after the first.

In 2016 then Minnesota Department of Health did send out our own survey to correspond closely to the original NCHAM survey and we had a very good response rate as you can see on the right side.

About 37%. Practice location was primarily Metro. This slide is somewhat confusing so, if you notice on the vertical access, the number of respondents, greatest number of respondents indicated that 20% or less of their practice included pediatric patients. So very much in line with that original 2012NCHAM survey.

Number of infants and young children identified -- and was very similar, most practices had five children or less that identified with them.

The next few slides that you'll see, again, focus on some of our key EHDI goals, screening completed by one month, diagnosis no later than three months. Early intervention no later than six months.

The wider portion of the graph of each pie chart were responses that were consistent with or matched some of those key EHDI goals and so for this slide, the way screening and rescreening completed by one month, you can see 2012 referenced 60% of respondents had a response that matched that goal and in 2016 we increased that to 90%. Positive result. Same with the next slide. Goal on this slide being diagnosis no later than 3 months. 2012 roughly 60% or so had a response that matched or was in line with that goal in 2016 more than 90% matched that goal.

Maybe a little misleading and again we tried to word things as consistently as we correlated to the 2012 survey.

So there wasn't a specific goal here. But our goal within one month of diagnosis and hoped that was going to be less. Again a wider part matching those responses in 2012, again roughly 55, 60% matched the goal in 2016. And same thing again for early intervention although in 2012, most responses -- most respondents understood that early intervention was important. 2016.

Related to unilateral hearing loss. 2012 just over 60% understood that unilateral hearing loss can impact speech and language development.

In 2016, roughly 80% understood that. So that's a nice improvement.And then our bubble burst a little bit and although we did not have this question on

the original 2012 survey to reference, as a baseline, this is a brand new question for us, we really wanted to find -- providing all this education and interactive collaboration,

conversation, the broader otolaryngology was understanding the sponsor of making referrals for diagnostic --  so the goal would be to schedule for ABR in this situation where a baby is not healthy and has evidence of fusion but as you can see again from a wider part, less than 50% so answer that. So although we would expect that this was an improvement if we had the 2012 baseline needed to go back to, we can see there's still work to be done.

And then just for your information if you're interested in taking this back and creating your own outreach we just wanted to get indication of otolaryngologist indicating about EHDI an email just definitely -- will do.

So just to summarize it really was helpful for us to be looking at our data and kind of using that and kind of derive trenches and having those discussions to develop some of our planning and educational materials.

And continuing to have those individual conversations in defining and continuing to expand this effort was very helpful.

And then also just to be able to measure outcomes to continue seeing what our needs are, but also to give ourselves a little pat on the back for this effort.

At this point we had -- Dr. pediatric otolaryngologist at Children's Hospital of Minnesota. Dr. Meyer was also a member of our advisory committee council. And, in the process of completing her masters in public health, so she's got that perspective. Great. I'm so happy to be here. I kind of weaseled my way into the EHDI program in our state. With my perspective -- I've just been very important. And I'm so happy I've become more and more involved. Just a perspective from the ENT provider.

I think for pediatrician standpoint you send them off to us and you hear back hopefully. You say well if there's a lot of questions, why do they do that and what are they thinking? I'm here to kinds of give my perspective and then obviously if there's any questions, feel free to interrupt as we go. So when I see a child who may or may not be deaf or hard of hearing. Sometimes at the point when I see them, we don't know yet. They may have had their screen in the hospital. And they had a rescreen and have not yet passed. But it still may be up in the air. So there's questions, what's been done from a testing standpoint and what needs to be done? So me getting an ABR is a no brainer but that's a little unfair because I see children like this all the time. I only see kids. In my practice I'm one of the -- well we all see children with hearing concerns but I'm probably the one who focuses mostly on it or one of the few who does. So to me it's second nature. I don't have to think about it much but for the general ENT the community up in rural Minnesota that maybe doesn't first of all, see a lot of children and secondly children in this situation, it's a little bit more challenging. So in my opinion, there is no reason not to do an unsedated ABR. This is going to go down to the bottom. There's risks and benefits to almost everything we do. And families ask me are there risks? Yes. Before they can even finish asking are there risks, yes, there's risks to everything we do but there's risks to not doing things. But this is one of the few exceptions because for an unsedated test for that child, there is really no risk to that child. It may be inconvenient for the family or give to get to appointment. There may be a cost. Those are all other things but for me thinking of that child I really don't think there's any reason to do unsedated ABR. That's the -- that's what this project was trying to get this out to everybody so it becomes second nature to everyone that that's

always the next step.But then you say Okay. Say they had an ABR. How complete was it. How valid

was it? How -- does everything seem to correlate? What does it look like? Looking over that testing and say Okay. Well, how complete is it? Is there anything else we should do to verify the hearing status before we then take the next steps. And then of course the history and physical exam that's what we do. That's what we're trained to do. As I'm talking to the parents, I also have one eye on the child just -- that taking in are they talking? What does speech sound like? This isn't just infants. This is any child that has potentially been identified as deaf or hard of hearing. What's their behavior like? How are they interacting with me? How are they breathing? All these things we've been trained to do and getting the history from the family is huge.

Physical exam is also important. What do the ears look like? It's hard to look in kids' ears. It's hard. It takes a long time to get first of all, comfortable with it and second to know what you're seeing. So you look in the mirror and you see is the child flailing about and for a baby with a super small ear canals that you can barely see, that's easy to say just look, it's easy to see. Ideally yes. It's really, really hard. And then the age of the patient obviously plays a huge role. If I'm seeing an infant who is five months old, and we don't know the hearing status, that immediately makes me a little anxious but it also plays into what are the next steps. They're five months old. We can't do it but what are we going to get the information we need. Do we need to sedate them. What's been done? What that's showed? How worried are we? What's the status of the whole workup and then I think that the fourth bullet is really important.

Is the workup going to change the options as far as next steps, management? Because if that answer is no, then you really have to look at the next bullet, the risk benefit. There better be -- if there's not options but better benefits. There better be something that child can get out of that test or the child shouldn't do it. There's risks to everything. That's what's going in my mind when I first see and walk through the door and meet the family with the child, what's going through my brain. I want to talk about conductive hearing because as Melanie talked about, the biggest reason for a delayed dying or loss to follow-up has to do with fluid. Changes in a child. If you're going to bet, that's the safest bet. Most of the time that is. But it's not always the issue. It's not always what's causing the increased threshold. It could be a vesticular malformation. That goes back to finding on exam on an infant it's not as easy as it sounds. Keeping that having a high index of suspicion, people are paranoid. Until the fluid is gone and you check, you don't know it's difficult in an infant when the ear canals are narrow. I am lucky I have a microscope and tools and if I have wax, I can get it out and look in a microscope. But that's an ENT in you look not all are comfortable with a 3-millimeter in an infant and may not have the resources to do that. My medical assistants do it all the time. Okay. You can be there, mom, you can make sure your child sees you, talk, sing to them. I'm going to help hold the head. Okay. So conductive in nature by three months. They've had the ABR. Conductive. Paranoid. You don't know for sure if it's conductive until you prove it. So we've looked at our data at NPH and 10% who were thought to have a transient loss which kind of typically in most situations would need fluid actually didn't. They had a permanent sensorineural threshold. That's consistent with other studies about that 10%. It's high. 1 out 1 out of 10. Think about that. You

have to prove it. You have to verify the hearing has come back in a typical range after the fluid has resolved. If you want to look at something from our literature, ENT, there's a little practice guideline that just came out in last year, about confusion and that's parts of the recommendation there. So a unified front, that statement technically only applies to children six months of age to 12 years of age. So for the newborn it doesn't Technically apply but I think we can extrapolate that.

So you know, why is there a high rate of loss. You see it completely eliminates patients and family practice. I'm not sure to talk about that. That's going to be here. That's something and we never blame the patient. This is more what can we do to reduce that rate? So what we found in our children at Minnesota who were loss to follow-up, 40% of had another medical comorbidity. So a child has other conditions they're seeking care for. Chances are they probably will find their way to one of the big pediatric medical centers at some point is that a place we can target to try to find these children? That's one potential way to decrease the rate.

45% of them saw the ENT. We're another target. How can we get to improve follow so 2012 these were conductive in their hearing 40 of 100 we got an answer to. Of those 39 had permanent hearing change. 4 out of 9 had complex medical histories and even two years later -- yeah, 70% full. We didn't know and have answers, audiologic follow-up happening and nobody is reporting it or is it just not happening? Data just from 2015 to showed things were better. Out of the 30 out of 100. Hearing status determination on. And then 52% better than 70. So that's still referring to a team of a lot of them plot clotting risk factors so unlikely to have something going on with hearing. Those are children that should not be lost to follow-up because those are children who need to assist them in coming -- we're -- okay. now quoted in there which I thought were helpful. So in the first study, infants that were referred for further testing who had fluid 23% food went away. Pretty good chance. 1 out of 4 will just go away.

And then another study about a third of newborns referred -- were referred -- question was of the 23% who had resolution any numbers on how long it took, not that -- no, not that I saw in the paper. I think there was a huge ranges. I will talk about that on another slide of timing. How long ago.

Yeah.So tubes, I mean I think a lot of you probably know what tubes are but here's what

this looks like and there's a dime in relationship. The lumen of most tubes, the opening is about a millimeter. They're really small and how they work they allow ventilation so the tube -- the tubes fit within the eardrum. One flange is outside the eardrum. One is deep to the eardrum and it allows fluid to drain out of the lumen of the tube but also allows air. So that's all of it? Communications are typically again from the OMB guidelines, doesn't pertain to children less than six months but kind of classic teaching that I learned as a resident was that in a child who has fluid after cube tights. 50% of resolve within a month, 70 within two months and 90 within three months and if they haven't resolved fluid the chance of resolving is much better. So obviously fluid for -- an indication so does this pertain? We don't know if this pertains to newborns.

I think that's a complicated question. We don't know and I think that's a dilemma for a lot of ENTs is this -- is can we apply this to the babies. Things that we think about what make them sway to make that decision one way or another. Are there other risker

factors for them to have a permanent hearing difficulties or difficulties that will get you increases for delay. That will be an addition to I think a range.

Is there on ABR was there a mix in hearing change. Were the thresholds in a more severe range where you think (audio cut out)

Now we're back.We can figure out how to minimize.What's that? No? Okay. I'm going to check. Great, see. Okay. So one of the big

topics in our field right now actually is what is the risk of anesthesia to a developing brain because there have been animal studies that have been concerned --

I got it.Cool. There were animal studies showing that potentially exposure of developing

brain to anesthetic agents could produce neurotoxicity. Studies up in humans were kind of mixed results. So they developed this panda steady which is pediatric anesthesia neurodevelopment assessment which is a study that looked at siblings one of whom had surgery and one of whom did not and looked at their IQ when they were older and they showed no difference in IQ.

So that study was just published actually in 2016 in JAMA. And I think that certainly as a pediatric surgeon thinking am I hurting children? I'm trying to help them but in the process am I hurting them. That made me feel good. Families ask all the time. I think we're still trying to figure that out because what about the child that has repeated anesthetics, prolonged anesthetics, we don't know but we're all thinking about it. So that's the thing when you think there's risks to everything we do. There's fluid, just throw ear tubes in. Think twice about that. There's risk to everything we do.

Uh-oh. Okay. I'll just click it. So what are the risks of having tubes after you have them in? Drainage from the ears can be really annoying in children than less than a year of age they tend to drain, they get a cold, they drain. The ear drops typically resolves but it can be burdensome. Changes to the eardrum after particularly after the tube falls out that can mean that it doesn't heal which is about 1-6% of the time depending how long the tube has been there. Short acting tubes in infants it's usually about 1 to 2%. That's what I tell families. The tube cannot come out or comes out and the hole can heal but it may be different. It might have a white Black sclerosis or flimsy and floppy. That doesn't affect hearing. That's common and you see that in people who had ear infections but not tubes so it's non-specific. And then rarely the tube instead of coming out goes in.

And so they -- the quoted percent of that is .5%.And then you have to usually go take it out. Sometimes you can leave. It's not

causing problems, you can potentially leave it. But there's risk of tubes, too. I'm going shift gears a little bit talking about when we've identified a child as being deaf or hard of hearing -- sorry.

>> AUDIENCE MEMBER: (off mic) >> So the question was for diagnosing ear fluid, you rely on the exam and

tympanograms. But what about OAEs? They /shouldn't, the presence of fluid, I don't look at it as far as helping me say whether there's fluid or not. I can't mention pneumatic otoscopy but that's huge where you watch the eardrum move. Tympanograms are reliable mostly. There's a little controversy because sometimes we

see where audiologists are like the tyms are flat, there's fluid. So they tell the family that and we look in the ears and there's not. Nothing is perfect. When they correlate they're great. But, if they're different, not helpful. Sometimes we'll say tyms are helpful if they're normal but, if not it's a problem. Was there watch. OAEs don't help me as far as fluid or no fluid. Bone conduction maybe aren't that helpful. Now I want to talk about what do I do when I see a child who come to see plea who has had ABR and been found to be a child who is deaf or hard of hearing? What kind of work]up things am I thinking about? So the questions everybody has heard about a million times. Genetics referral, EMB testing. For me CMB testing a lot of times by the time I see an infant who he's been identified as deaf or hard of hearing they're past that 3 week window. But when I get the CMB test for is because if it's negative, I can tell the family this is not why your child has hearing loss and I think that's helpful. Takes it off the table. So I tell them right away if it's positive it doesn't help us that much. But if it's negative it helps us. Eye exams and imaging. I'm talk about imaging as far as intervention options, obviously I'm not going to talk about these things a lot because you -- I'm sure there's an expert that knows way more about this but I talk to the family early intervention is coming out and following you, working with you, payment support groups, hands and voice is really active in Minnesota. Discuss just briefly mention language options because that's not my area of expertise. I just want them to know there are options and as far as going into depth. That's not -- I don't think that's our role as ENT. I'm happy to answer questions but as far as details, I just think it's important for families to know there's options there and technology options. Sorry I cut off. Etiology of the hearing differences in children, we've seen this most of the -- more than 50% of the time it's genetic, quarter percent of the time we don't know and other 25% it's hodgepodge and I'm not going to spend a lot of time in that. I always offer the referral to genetics. This is something that that makes families really nervous. Sometimes they're like if I sense, if I pick up on a little bit of from the family I say you know what? Go meet with them. You don't have to do the testing. They will talks to you more about what are the options for testing and what are implications of that. But it probably won't help. They can have that discussion with you. Geneticists start with connexin testing and carrier rate and general population for variant that causes -- a variant that causes connexin associated hearing changes is 1 in 33, pretty high. Hit rate is often pretty high and they'll reflex to the panel whatever panel they choose. So TB testing with talked about that again. I'm not going to spend a lot of time because there's been whole sessions on that. You probably heard a lot about it. 20-30% of children who have sensory hearing change will have an ophthalmology finding and I see that all the time in kids I take care of. They come back and maybe have glasses or they don't know we're going to see them back. They become regular follow-up. Very, very common and with CMB factor too. There is one to 2% of them that will have asymptomatic that will have vision problems or loss or something that ophthalmology will want to follow them for.

So imaging. So imaging is kind of the same debate as far as ABR and sedation. Two types of imaging, CT and MRI, this sees bone so top picture on the right is CT. Show children specifically. That's where MRI is helpful. So bottom images are an MRI so the one on the left you can see that that -- the little dot lower left quadrant. That's a

nerve so that's what we're looking at specifically more for MRI. Honestly what they pursue and what their protocol is. The findings of the imaging going to change for the child and most of the time that answer is no.

CT is great. Don't have to be sedated when you're a baby usually. Quick and easy. But radiation exposure.

MRI is great. Radiation exposure and takes a long time want to be sedated either one risk benefit so, if it's not going to change what you do. Technology options non-surgical you know the use of amplification options of course the kind of hybrid for surgical non-surgical are bone conduction devices. Once they get FDA approved, you can do surgery implanted options of that technology. Of course cochlear implantation is an option. One of the implant surgeons at children's. How can you engage ENT. That's what Melanie asked me. I look back at training and I had no idea. Wasn't until I did pediatric fellowship that I started to get it a little bit. Honestly. I'm Minnesota's AE champion and often my list from our meeting is I'm contacting our program director to give a lecture on EHDI 101 because no one gave me that lecture.

You know? So I think that's something you can outreach to the program directors they're

usually really reasonable because their job is to promote the education of the residents and they're usually looking for people to give lectures and di deck ticks and information. Didactic and information. I think -- those are the people going out to practice.

You know? Most of them are not becoming pedes or other specialized they're going to go into general practice and those are the ones we need to target to keep up to date because they're the ones seeing recently. Be present at the meetings both local regional and national is these guys do with Minnesota academy meeting. When you go reach out to the clinics, you're reaching out to audiologists but reach out to ENTing while you're there too.

I had a lot to learn from them. But to do that you have to have an open mind and hopefully, you're a surgeon you can change us. But educational materials find an interested partner, find someone who has an interest in it and invite them to come to meetings. I got involved because of MPH work, that's how I find my way to these guys and I would go to the advisory committee meetings before I was even officially a member and I learned so much and so find someone that's interested in getting involved and get them involved. And then maintain the strong relationship with the primary care because those are the people and audiologists those are the people who send the patients to ENT. If it's something -- and I'm sure if there's parents here, you know, your parental intuition is strong and usually right. With providers as a pediatrician, if your spidy sense is tingling that something isn't right or anybody seeing the child don't be afraid to go to second opinion. No one should be afraid of a second opinion. People ask should I get a second opinion? Yes. If it enters your mind to get one, get one. If they see it as the same thing, you're going to feel good about it. I think if -- you know, making sure that those people know what the right thing to do is so, if whatever they see doesn't do that, then they say it doesn't seem right, we should get another opinion.

Okay. All right. We're right on time.Is it working? So as you can imagine, it's not a quick fix.

Which I think as EHDI programs and stakeholders in EHDI programs we have come to learn sometimes the hard way.

And we still have work that needs to be done. And I know I mentioned earlier we do feel fortunate we have a strong advocate in the ENT community. And ask Abby before she gets here, if someone comes up to you and wants help finding you in their state. Importance of relationship. As an audiologist, I may not have the strongest impact. Of group of ENT physicians but having support present messages the information we're wanting is really vital. So next as Abby mentioned the training programs and really continuing to get the get the visibility of EHDI out there to ENT and primary care facilities to show outcomes of what we're doing and where the gaps are because if the gaps continue to be in certain areas, we can use the data to hopefully make change.

What can you do if you're interested in looking at improving the education and knowledge and practice of ENTs in your community. I would start with some kind of baseline data. So it really helped us guide where we wanted to focus the improvements and then like that's how we determined the barriers and gaps and knowledge. And then as I said collaborate with ENT to help guide the efforts. Having the ENTs working on guidelines and then supporting them was the only way to get them out there and have them taking seriously. So in the guidelines we do talk about newborns that haven't passed screening versus newborns that have had a diagnostic evaluation. Just continue just small tests and grow your effort and reassess and continue planning. So that's what we're going to do next? We're going to reassess and continuing planning. It's not over. There's still work to be done. But it was exciting, it was exciting to see a change in knowledge and practice. Questions or comments?

>> I wanted to ask I'm the nurse educator with Alabama's newborn screening program. And recently my EHDI coordinator came to me and said you need to mark this in your calendar we're going to see ENT's office. So she had actually followed a baby and it was one of these where they were going to wait three months to rescreen the baby. It's already several months old because of this health food thing. So we've been talking because I do everything education with our program. Anything newborn screening is I'm the education for it. And we talked about webinars, we talked about putting together some type of packet for them. And the webinars what we're really excited about and I saw your graph and I thought well there's not a lot of interest in that. Do we want to do that? But since we really haven't started anything yet, really first step getting out there and making that initial contact, what would you recommend to really first I questions get their attention because I mean, I don't care what office you go in, they're busy, got their date to do. It's hard to engage them in the first place.

>> What I would say is if they have some sort of -- I mean I imagine there must be like an Alabama ENT state meeting or some sort of event where you can be at. I think that's probably the best way to start. You could email but we get billions of emails and it's so easy to hit delete that I would worry if I start by a mass email that 2 woo get deleted more often than it would be read. I think having them at Minnesota meeting the attendance is okay, not great, not like our national meeting of course. That's where you're going to get most of the ENTs in the state together most of the time if there's any place. I think that's probably the best place to try to start.

>> My question to you is do you think it is necessary to wait until a child has clear ears to do an ABR, a diagnostic ABR.

>> No, never, no. >> Thank you. >> No. >> And that's what I -- you know, it's funny when I first did my slides, I didn't think to

talk about that much because well, duh, but that's again my practice. That's me. I see this all the time. But I think for general ENT who doesn't see children frequently, they clearly don't know that. Because that's what that one question, clinical scenario, 50% of the time they did not say get the ABR. So that's where we really do have to target more than anything -- I don't know if that's an access thing.

You know? Because that's another thing I'm spoiled. I've got how many pediatric audiologists where we say let's go get an ABR, walk up to the desk and schedule it versus out states it's -- you know, there's not pediatric audiologists doing ABRs all over. So I don't know if that factors into your mind where they don't -- that's where I think having pediatricians know that's not the right answer, I just had that scenario within the last month a child that came down to see us because they'd seen an ENT somewhere else and said we'll wait and we'll wait for three months and come back and try to retest. And by that time the child is only three months old. But still, that's not the right answer. So pediatrician was savvy enough to realize that's not right and sent them down. Targeting the pediatrician is super important to make sure they don't feel afraid to do that and other thing is pediatrician requests order ABRs. Doesn't have to be ENT.

So, if the pediatrician is like oh, didn't pass rescreen, I'm going to send you for ABR a lot of times that's what happened. I see them and it was pediatrician or audiologist recommends it and they go schedule an our clinic just contacts the PCP and says can you send us an order for ABR. So I guess making sure that that coordination is kind of seamless too. Audiologists aren't afraid to reach out to the pediatrician because they can order an ABR. Doesn't have to be ENT? >> AUDIENCE MEMBER: (off mic).

>> No. Well, Okay. Here's the deal with that.We used to.But we're trying to get away from it and the reason is because if you do tubes, you

suction the fluid out, you never get it all.Because I've had plenty of kids that they have to get a CT for maybe another

reason so we do tubes, ABR, CT. This is less frequent because we're trying not to image as much as we used to early. You think I've got all this fluid out it's great. Look at the CT. You've got the littlest part out right behind the tube and the rest of the ear is full of fluid. So then what happens when you get a mild loss? What do you do with that information? You're going to have to repeat it anyway. So what we've been trying to do actually is get the tubes, let things clear, then either -- and it depends if they -- you know what they had for their newborn screening but, if you can do an OAE in a month and they pass in both ears, then you're done.

If they're a NICU baby it's more complicated unless you have automated ABR but, if you try to do an unsedated ABR and sometimes we have to sedate them guys.

That's always a bummer but you know, it's -- I'm not saying you should never

sedate a child for ABR. I don't want us to swing too far that way where we're afraid to sedate and we're missing kids. We have that even with kids who we can't clean their ears very well.

And everyone's so hesitant to sedate them for an ear cleaning. Sometimes we have to do that.

We have to just sedate them to make sure we're not missing something with their ears so we've got to find this happy medium. But I think if you can -- again, the reason not to -- another reason not to delay the initial ABRs is so you don't have to make that decision because you've had the ABR before and you know it's a mild conductive loss. Okay. Bone line looks good, we can take a little bit. We still need to prove at some point that that's what it is. But you know, it may not be such a sense of emergency.

To get that answer.>> For a little older kids, how long do you recommend waiting for fluid? I've heard

anywhere from 4 to 8 weeks. And I'm just curious how long ago I tell parents to come back. If they're toddlers or a little bit older. For retesting or re-- going to see you guys.

>> Yeah, I think it depends on if there's anything else going. So, if a child has -- is deaf or hard of hearing, and they have fluid, quicker to put tubes in that child for sure. If they have other like developmental delays or language delays or something else where you really want to optimize everything you can in your power, then I do that quickly. But for otherwise healthy toddler, three months of fluid.

>> I was just going to make a comment that it had been my experience that when an ENT delays the screening method or doesn't do the -- (audio cut out) Trying to redial. Still trying to redial.

No answer.