Hearing Matters Podcast: Hearing Aids, Hearing Loss and Tinnitus

Microtia, Atresia, and Hearing Loss with Melissa Tumblin, Founder of EarCommunity

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A birth surprise. A scramble for answers. And a mother who refused to accept “good enough” when her daughter’s hearing—and future—were on the line. We sit down with EarCommunity.org founder Melissa Tumblin to unpack microtia, aural atresia, and the real costs of unilateral hearing loss that too often go unseen: delayed speech, safety risks, and the daily strain of listening with one ear in a noisy world.

We walk through the early months—ABR testing, confusing terminology, and the long wait to discover bone conduction hearing devices that bypass the outer and middle ear. Melissa shares the moment Ally’s device switched on and the room changed, along with the aided audiograms that moved from loss to the normal range. From there we zoom out: how to practice at the top of scope as clinicians, when to refer, and what families need to know about candidacy for bone-anchored systems, CROS, and cochlear implants.

The story widens into advocacy. Coverage denials are common for people with atresia and unilateral loss, even when a device is medically necessary. Melissa explains Ally’s Act—a bipartisan, bicameral bill that would require private insurance coverage for bone-anchored systems and cochlear implants, including fittings, programming, surgery, post-op care, therapy options, and five-year upgrades for qualified patients up to age 64. We discuss the small but significant population at stake, the path in Congress, and how families and professionals can help: share your story, contact lawmakers, and close the loophole that keeps people from the hearing tech they need.

If you’re a parent new to microtia and atresia, you’ll find reassurance and practical steps. If you’re a clinician, you’ll find a call to raise awareness and make the right referrals. And if you care about access, you’ll hear how a single family’s journey became a movement for equity in hearing health. Subscribe, share with someone who needs this conversation, and leave a review to help more listeners find it.

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Blaise M. Delfino, M.S. - HIS :

You're tuned in to the Hearing Matters Podcast, the show that discusses hearing technology, best practices, and a global epidemic. Hearing loss. Before we kick this episode off, a special thank you to our partners. Sycle: Built for the entire hearing care practice. Caption Call by Sorensen. Life is calling. Care Credit: Here today to help more people here tomorrow. Fader Plugs, the world's first custom adjustable earplug. Welcome back to another episode of the Hearing Matters Podcast. I'm founder and host, Blaise Delfino, and as a friendly reminder, this podcast is separate from my work at Starkey. I'm your host, Blaise Delfino, and this episode is one that I personally and professionally have been looking forward to. When your child is born with a condition you've never heard of, everything changes. Your plans, your priorities, even your purpose. My guest today, Melissa Tumblin, knows that moment firsthand. Melissa is the founder of Earcommunity.org, a nonprofit that has helped thousands of families around the world better understand and navigate life with microtia and oral atresia, congenital conditions that affect the outer ear and sense of hearing. But Melissa's story didn't start in the world of advocacy. It started in corporate boardrooms, on airplanes, and in meetings until the day her daughter Allie was born. That's when she made a decision that would change not just her family's life, but hearing health care access across the United States. Today, Melissa is leading national conversations with elected officials and hearing health care organizations through Allies Act, a bipartisan bill aimed at ensuring insurance coverage for bone-anchored hearing systems and cochlear implants for individuals born with conditions like Allies. Welcome to the Hearing Matters Podcast, Melissa. It's so great to have you.

Melissa Tumblin:

Thank you so much for having me on. Good morning.

Blaise M. Delfino, M.S. - HIS :

We have so much to discuss and review and cover today. So let's get started. Your story and your shift. Melissa, you had a full-time corporate career. You were climbing the corporate ladder before Allie was born, and really things have changed. Can you just please walk us through that moment? Really, when you looked at your life, saw Ali's condition, and said, you know, this is more than corporate travel, more than boardroom jargon. What was going through your heart? What kind of fears did you face? And how did you make that decision? Because that's a tough decision.

Melissa Tumblin:

Yes, it was a very difficult decision. It's half an income, and it was my career. But what happened was I, you know, I already had my older daughter, and I was working, and then Allie came along, and she was born missing her right ear. And we really couldn't find the answers that we were looking for. Nobody really knew what to say. And I think when I was in the OR, I used to market laparoscopic instruments, I was the advocate, you know, for the perioperative nursing staff and the surgeon with the product line that I managed. And then when Allie was born, there wasn't anyone there to advocate for me. You know, there wasn't, like I said, any information. I had gone online, found bits and pieces scattered. Things were not very consistent. And most of all, we felt very lost and alone. You know, our doctors just kind of said what Allie had, my crossha and our Latricia, that it's pretty rare. So we really thought we were the only ones here in the state of Colorado with the baby missing her ear. So yeah, there wasn't anyone there to advocate for me. So that's how this started.

Blaise M. Delfino, M.S. - HIS :

And when when you have your child, and and speaking from experience, uh, when my son was born, we were in the NICU for a week, and that absolutely changes your life, changes your perspective. So I can't say I know how you feel, but I can understand the fear, the maybe hope of I wish there was a professional here to help me understand the journey I'm going on. I mean, what did you immediately do when Allie was born and you realize, you know, she had this rare condition that neither you nor your husband have, you know, had heard of before?

Melissa Tumblin:

Well, of course, at first as a mother, I blamed myself. You know, I thought, oh my goodness, did I eat or drink something during my pregnancy that I didn't know, you know, something that wasn't on the label. I did everything right during pregnancy and the first time around with my other daughter. And then when we couldn't find the answers from our doctors, it was about six months later, I sat down and and this was very serious thoughts going through my head. I decided I think I'm going to start a support group. And I sat down at my laptop and thought, am I really going to put my child out there? Because Allie's the one with my Crocha and Atresia. You know, no one's going to talk to me. I have two ears. And so when I did start my support group on Facebook, it became very clear it was not just me and my family that was lost. It was the same question splays. It was, you know, why did this happen? What is it called? What are our options? Like I said, there was, it did not appear there was an advocate for the community. And a lot of families were in the same situation with the same questions, feeling lost and alone, just like us. And I guess the marketeer in me couldn't stand that. And so that is how I started the support group and quickly realized people had the same questions. There was a need for this.

Blaise M. Delfino, M.S. - HIS :

For parents listening who may never have heard of microcha and oral atresia, can you explain in your own words what these conditions are, how they affect hearing and development, especially when one ear is involved? And, you know, why early awareness and intervention matter so much?

Melissa Tumblin:

Right, of course. So microcia is when the outer ear does not fully develop or is missing. This happens during the first trimester during pregnancy, when the kidneys and the heart is also formed. And then the aural atresia part is the hearing loss part. Along with the missing ear, often comes a missing canal or a canal that's on the verge of closure or partially closed. So hearing is impacted. And at the beginning of our search for answers, no one really explained to us Allie's hearing loss on top of her medical diagnosis. So, you know, we originally were told she has microtia. And then it took about two and a half months for us to get into the children's hospital here. And that was the first time we had learned about the other component, the atresia part. And I thought the doctor was saying it wrong. I mean, this is how it comes across to families. It's very confusing. So that's that's when we realized she has microcia and atresia and connected that and put that together. And in addition to that, you know, I thought, because I'm not a hearing healthcare professional where I understand hearing loss, I thought if one ear isn't hearing, the other ear just picks up everything else, compensates, right? 50-50. Nobody explained how Ali was hearing. And then when I realized she has hearing loss in her right ear, you know, affecting the left side of her brain and how she's interpreting language, she absolutely had speech delays. I didn't realize when you can't localize sound that you also can't hear somebody sneaking up on you or the direction that traffic is coming. I wish somebody had shared that with us because at first I really thought, well, she still has her other ear. That's often what we were told. So it was a whole learning curve on top of what we were learning.

Blaise M. Delfino, M.S. - HIS :

For our parents and listeners tuned in, the the way that hearing works is you have acoustic energy enters the ear canal that's then transferred via the middle ear from acoustic energy to mechanical energy, and then in the inner ear, it's transferred from mechanical energy to electrochemical energy. In Allie's case, the I want to say quote normal pathway to hearing affected her sense of hearing. So as she is this infant being exposed to so much language and so many new sounds, she is not going to, nor did she hear those sounds, as a child with two functioning ears would have.

Melissa Tumblin:

Yes, absolutely. Allie was not hitting her speech milestones. She was delayed in a lot of her vocabulary. And and we discovered it was about 11 months, is when we finally found out about the correct hearing device actually would help her hear better.

Blaise M. Delfino, M.S. - HIS :

Melissa, let's dive into that right now, because again, you know, it was that journey from diagnosis to support. You really realize that, you know, you and your husband having these conversations, navigating all these options between the hearing tests and the devices and surgeries and support, my goodness, it is so much. It's so much. And again, just thank you so much for the work that you're doing. What were some of the biggest gaps that you encountered as it relates to let's dive into the selection of the devices? Like, what did that journey look like?

Melissa Tumblin:

Right. So, you know, when Allie was missing her ear, and we were really surprised during her delivery, and no one could share with us why this happened. It was obvious to us with her ear missing, she must have trouble hearing. And so during our doctor's appointment, this was the one at Children's Hospital two and a half months after she was born. That was one of our very first questions. Surely she must be having trouble hearing. You know, is there a hearing device for her? And we actually were told she wasn't a candidate for a cochlear implant at the time. We left that appointment thinking that's good information. Because we hadn't heard of a bone anchored hearing device. And we had no idea to even question that or ask for something different. And then when we found out, I couldn't believe that we weren't told about the only device that she could benefit from. You know, again, not really having very many people in our family with hearing loss. I didn't even understand that there's all kinds of different types of hearing loss. And there's all kinds of different types of hearing devices that treat those different types of hearing loss. And some you can benefit from, some are not for you. You can't be a candidate. And it was just quite a surprise when we found out about a bone conduction hearing device. And that was incredible when we finally found out.

Blaise M. Delfino, M.S. - HIS :

And the importance of, and this is to our professionals of practicing at the top of your scope. Again, it's years later, but nonetheless, nonetheless, at that time, Melissa, hearing care professionals continuing to back then, but even today, continue to practice at the top of your care and making that appropriate referral. If you are a hearing care professional who maybe doesn't specialize in bone-anchored hearing aids, but you know what, Melissa, I know a phenomenal audiologist or hearing care professional who does, or an ENT who does. So that's again why we do what we do here at Hearing Matters is let's raise awareness, Melissa. You and I right now, we're collaborating on spreading the good news of better hearing because chances are there's a parent tuned in right now who might be going through exactly what you went through. And if we can shorten maybe that learning curve, provide some of that support, not only through this episode, but also through your support group, that means that we've done and are continuing to do our job. So your community, it's now global, supports both children and adults. What has surprised you most about building that peer-to-peer and professional bridge?

Melissa Tumblin:

Yeah, so I guess the best word that comes to mind is community. We're all a part of the same community, whether we've sought help from our medical professionals or the families that are going through the same situation. This was one of the challenges I had when I had first gone online looking for information, and I couldn't find it. And so with your community, I wanted to make sure everything was in one place. And over the years, I've been able to collaborate with medical professionals and, you know, help these families find the answers that most of us are lacking for whatever reason it is during our deliveries. And it's very overwhelming when we're having our babies and it's supposed to be such a wonderful moment. You get kind of lost and caught up in the months following. And there's a lot of worry and concern when you have a child that is struggling at first, or there's something unexpected. And so, yeah, through community, I've just been able to form a lot of relationships. And with that has been a lot of collaboration, which has been absolutely incredible. Again, this is something that was needed. Families didn't know where to go all the time. Not everyone goes to the audiologist. Not everyone goes to an ENT. Some people don't have insurance. And to be able to have a helpful resource online and find those answers, it has been it's been amazing. A portal of information.

Blaise M. Delfino, M.S. - HIS :

Let me ask you, because there's probably countless stories that you could share with us, but is there one interaction, one story? I mean, all of the stories in terms of your community, they are success stories. You know, you're creating this platform to provide support. But is there one story that sticks out to you? Is there one that comes to mind that really kind of will live in your heart for forever?

Melissa Tumblin:

Yes, you're right. There are many, many stories, all ages that I have seen incredible things happen. But the one that stands out is mine. So when we first aided Allie with a bone anchor hearing device, after we finally found early intervention services, and you know, they helped me understand what she was missing and explained to me language and vocabulary skills are coming in. And I I will always remember our audiology appointment. Our audiologist switched on the bone anchored hearing device on Allie and whispered her ear, Allie, behind her ear. And she whipped her head around and she, her eyes lit up and she smiled. It truly, we saw this in her face and we're both teary-eyed, and we couldn't believe it. And it was the same with her early intervention providers. They said it was as if she had been engaged again with her environment. Because honestly, getting to know Allie when she was under one year of age and trying to understand her hearing loss and why my crochet and atrasia happened to my child and all this, I guess I didn't really understand or realize why she wasn't very responsive. You know, again, I was told she still has one ear. She's hearing. So I feel like I was a little misled. And then I kid you not, that was the sing is believing moment. I will never ever forget. It meant so much. And I share that moment all the time, but I see it again and again. You probably do too on these videos. When children are aided for the very first time, it's an incredible experience. And like I said, it was absolutely a sing is believing moment.

Blaise M. Delfino, M.S. - HIS :

So it's a whole new hearing world for them.

Melissa Tumblin:

Yeah.

Blaise M. Delfino, M.S. - HIS :

Oh my gosh, that must have been you. I could only imagine. And it left an imprint, and it will. It's probably one of one of the greatest days, I'm sure, that you can look back on. Introducing her to her new hearing world. And again, with hearing unilaterally. I remember being in practice, patients coming in, Blaze, do I really need two hearing aids? And I would always say, if you have hearing loss in both ears, yes, we need to aid both. But in Allie's case, and so many of these other kiddos, and even adults, this is I'm talking all-encompassing here. When you have one good ear and the other ear, maybe there's total loss of hearing, or you have, you know, microcia with atresia, you have what's called head shadow effect. So if the good ear is on the left, then a pan is being dropped on the right side, even if it's, you know, 10, 15, 20 yards away, or I guess we should go with feet, yes, that acoustic signal is not going to reach that good ear as quickly as it would that that right ear. But then there's also localization, Melissa. There's also localization that if you're calling to Allie on her left side, and the time that it takes for that acoustic energy to get to the better ear, that's why we always say aid both ears if you do present with hearing loss. Obviously, there's cross devices today, bone-anchored hearing aids, cochlear implants. Again, we recommend if you have a child who has a similar diagnosis as that of Ali's, please seek a hearing care professional, audiologist, ear, nose, and throat, someone who specializes in implantation. And Melissa, let me ask you before we get into the incredible advocacy work that you and your team are doing, I want to ask you about the professionals, the medical professionals that helped you, not only you and your husband, but Allie as well throughout this process. We're talking audiologists and speech language pathologists. Again, professionals in the medical field, early intervention, all the way through school. How essential were those professionals throughout the journey?

Melissa Tumblin:

Well, it was going back to like community. Everybody works together. And if you need help, it is out there. You just need to know where to find it. So when we started discovering this incredible help after feeling lost, yeah. The first person to really work with us was an audiologist who did the ABR. And I remember she was great. We actually had to go back and redo the ABR. She wasn't sure if the machine was calibrated correctly. And so I appreciate it. She wanted to make sure everything was good.

Blaise M. Delfino, M.S. - HIS :

Yes.

Melissa Tumblin:

You know, and that took that took part of the reason for the two and a half months to be scheduled at Shelter.

Blaise M. Delfino, M.S. - HIS :

And that's what we call practicing at the top of high standard of care. The fact, though, that the audiologist said, I believe that these results are correct, but let's bring you in, I'll have it recalibrated. She could have let that slide. But because we have ethics in audiology as professionals, I that is music to my ears. Pun intended, Melissa.

Melissa Tumblin:

There's there's people that are there to help you along the way. And I will always remember who they are. Like I said, even with Allie's intervention team, her early intervention specialists, we were able to benefit from speech OT and PT. And I learned so much from her speech therapist. We went through a couple of audiologists and we found Sandra, she, the one I call is our third time is the charm audiologist. She actually had a few patients that had microtia and atresia, which made me feel good because with this rare cause, it's just rare enough to where not every audiologist, not every ENT maybe has a patient come through their door that has microtia and atresia. And so because I already felt a little misguided and felt alone and not, you know, I'm struggling to find these answers. When I found an audiologist that had patients like Ali, oh, that also was very important to me. And she was fabulous. You know, I learned a lot from her. And then one of the most important things was it's funny how it's a small world. So my high school graduating class, my class president, Krista, turns out she somehow found her way into the audiology field. She used to work for the EAA, Educational Audiology Association. And so when I had Allie, and this was about six months after Allie was born, and I started researching, I reached out to her and she said, you know what, let me put you in touch with a couple of audiologists, which was Dr. Linda Cox and Dr. Cheryl DeCante Johnson, legends in the field. Had conversations with them. And this is truly when they helped me understand Allie's hearing loss. I also was worried about her flying on like the airplane. They shared with me about different earbuds, you know, different protection. And those were the most incredible moments. And of course, the first ENT we did go to, he exceeded his appointment time. He took care of us, he answered all of our questions, but no one is a mind reader. You know, for rare causes, there's not always a conference that someone can go to and do a download. So we just kind of stumbled along the way. But there were many professionals along the way that I'm forever grateful for their help because they got me to this point and they educated me. And that's what every parent wants and needs. You you want to know everything about your child so that you can help your child as best you can.

Blaise M. Delfino, M.S. - HIS :

Oh my gosh. Yeah. And Melissa, being a first-time father now, it's like, oh my gosh. I I totally get it. I totally get that you absolutely want what is best for them from a health standpoint, a hundred million quadruple percent. For sure. Let me ask you, let's go into the advocacy work that I would say both you and Allie are doing in partnership with so many others. So the challenge that you were seeing was the role of hearing devices and the insurance barrier. So, really, one of the core issues behind Allie's Act is access to medically necessary hearing devices. So, bone-anchored systems, cochlear implants, and insurance coverage. From your vantage point, you know, what are the real life consequences when coverage is denied? And bring us through where you're at with Allie's Act, what's going on. I would say right now, this is your legislative update because I need you to download me because I'm curious and I want to know everything.

Melissa Tumblin:

Yeah. Well, I'll give you two examples. So, first of all, with Allie, when we were first told about the bone-anchored hearing device that could help her hear, imagine you have a child that has hearing loss and you learn about technology that exists that can help. And then you go to, you know, your insurance provider. Why would they not cover a hearing device? Right. And then it's explained to you in medical terms about, you know, reaching milestones for speech and critical years of development and all this information that we know. And then you can't obtain this device that is supposed to help your child. It was unbelievable. It seemed actually ridiculous. You know, how could this be? And another way to look at it is someone like you or me, any adult, any teen, sometimes hearing loss sneaks up sneaks up on us when you least expect it. And you learn that there's this kind of hearing device technology that can help give you your life back. Can you imagine not hearing one day when you wake up? How are you gonna go to work? How are you gonna have a job? How are you gonna provide for your family? Have a roof over your head. And you learn that technology is available to help you go on your way and pick up those pieces and start again. And you can't have access to it. So what we had run into was a denial. A lot of times insurance companies will say, Oh, well, in our case, unilateral hearing loss, you've got one good ear, that's good enough. Also, try explaining to insurance providers that your child is missing one or both ears. There's not really like a section that explains why this happens or that, you know, this this does happen. It's really hard to explain. And what I discovered through my support group and through ear community, and by the way, my organization turned 15 years old this year. For the past 15 years, sadly, I have watched family after family be denied access to these hearing devices, the bone anchored or bone conduction hearing devices. And again, these are the only hearing devices that our children and adults can benefit from. You know, we can't just go try a regular hearing aid. You know, these devices involve surgery. They cost money. You know, why why would you not want this? And going back to my sing is believing moment, it wasn't just when I saw Ali's face light up that was enough for me, but her audiogram. Over the years, she had been tested in the booth with it, you know, being aided and without. And for me to see on paper my child's hearing loss down here go to up here and go back to the normal hearing range, what parent would not want that for their child? So this is how all this began when I started putting pieces together and realizing things seem to be available, but yet we still don't have access. And what I discovered even more was that insurance providers do cover these devices, but then they also deny people. And so I realized there's a loophole. It seems to be hit and miss. It shouldn't matter with the plan you're on or the state you live in. This is a primary way of all of us communicating in everyday life. So that's how this advocacy started, along with just trying to find other families like us and bringing our community together so no one feels alone and we're all in the same situation.

Blaise M. Delfino, M.S. - HIS :

And again, to your point, not only just the critical years of language acquisition, but becoming and continuing to become these members of society to lean into our God-given gifts and talents. And when we know from an economic standpoint that untruded hearing loss, absolutely, there is an economic adverse effect as well. Because so many of these children, if they're not getting the technology that they need to hear life's story, how are they going to perform in school?

Melissa Tumblin:

It sadly takes away the opportunity for them to thrive.

Blaise M. Delfino, M.S. - HIS :

Yes.

Melissa Tumblin:

And their communities and become, you know, their dreams that they dream.

Blaise M. Delfino, M.S. - HIS :

Yeah. So you set the foundation of Allie's Act. The pain point was what you were personally living through. Seeing that denial. Where are we at today with Allies Act? What is the most recent legislative update? What does the support look like? What has the response been from the elected officials that you've engaged with? Because I I know that you've, of course, visited DC and you've met with a few. So kind of bring us through this legislative update. This is interesting.

Melissa Tumblin:

Yeah, well, and like I said, after watching family after family be denied for the past 15 years, you know, it's not even just an issue of having an opportunity for your child to thrive in the community. It's a safety issue. You know, we have to hear and so it was during Better Hearing and Speech Month Allie was in third grade and she was assigned a homework assignment. And on this assignment, it explained, you know, you can do a few things to give back to your community. And one of those, along with like volunteering for an organization, you can also reach out to your local lawmaker about something that matters to you. And so Allie said, you know, I want to talk about maybe we should tell our congressman about my Baja. And so we did. She wrote a letter and asked our congressman here to just help me advocate to hear better. And that he did. I actually was in DC and met with uh Congressman Aguse and he's the sponsor of our bill, and he agreed to help us make this right and close the loophole. And so that is how Allie's Act was born. Allie's Act is a bicameral. Federal piece of legislation. So if this bill passes, every state would benefit from its services. And the services that are included in Alies Act is it covers the bone-anchored hearing device or the cochlear implant, covers both devices. It also provides an upgrade for the devices every five years. And you know, provides an ENT and a fitting and programming appointment. A lot of times the fitting and programming fees, they're going up. They're very expensive too. And then when you're ready to have these devices surgically implanted, this bill would cover that as well, including the postoperative care appointments. And it also provides your choice of oral therapies. So speech, ASL, or cute speech. The two hearing communities, cochlear implant and conductive and sensory neural, they're very different. You know, and we're talking about people that are born deaf. They've never heard their voice. They have to learn how to talk again. And then there's the rest of us that they're like, wow, is that my voice? I've never heard my voice, but they've already, you know, established speech. So where this bill's at, it is six years old. It takes a very long time to pass a federal bill. And this bill would help the deaf and hard-of-hearing community, children and adults up to age 64, to obtain coverage through our private insurers for these devices. These are medically necessary devices. And you have to, of course, become a candidate and qualify in order to get them. And the reality of it is there's only 450,000 people in the entire United States that even wear cochlear implants and bone anchored hearing devices. This is not a bill for millions and millions of people, but it would help the half that are often left out and turned away from their insurance provider. So it's such a small and focused bill. We're talking about just 200,000 people. And we hope that this bill will pass someday. So we have Allies Act in both the House and the Senate, and bills do not pass themselves. We have to have the community be involved. And that's medical professionals, families, and our community advocates. They need to just simply reach out to their congressmen and senators and ask them to co-sponsor Allie's Act.

Blaise M. Delfino, M.S. - HIS :

So, Melissa, to our listeners tuned in, how can they help? How can they support? Where can they learn more information? Is it is it helpful if they reach out to their own elected officials asking for sponsorship of Alley's Act, the bill itself? What does that look like? And and how can the community rally behind?

Melissa Tumblin:

Yeah, so we are asking the community and everyone involved to reach out to your congressman and your senator in DC. So you would reach out to their DC office. You can send an email through their website, you can call them. And all this information on how you can learn how to advocate to champion Allies Act to passage is found on ERCMU's website. So if you go to earcommunity.org, there's an Allies Act page. You just click on that menu tab and it shares all the information. We have the one pager, which explains what our bill's about, and also our list of endorsers. And most importantly, when we encourage medical professionals and community members to reach out, you know, share your story. Speak from your heart. Say, look, my child was also denied this device. You know, we too have my crochet and atresia, or, you know, I'm an adult and I woke up one day and I had sensory neural hearing loss and I can't hear in one ear. And, you know, this is the only device I can benefit from. And maybe they were also denied, you know, as a medical professional. These are the very patients you serve every day. And you see this continually, where this is the best option for them. And even though it's approved by our doctors, you know, for whatever reason, insurance likes to deny it. And this is the reason why Allies Act is in place, because it is not okay to override professional medical opinion of our doctors. These devices are needed, and it would improve the lives of so many.

Blaise M. Delfino, M.S. - HIS :

So many. Melissa, I can hear the passion in your voice. I love it. Thank you so much for what you continue to do, not only for Ali, but for the hundreds of thousands of individuals that can benefit from a new hearing world. Truly. And what we'll do is we'll make sure in these podcast show notes to, of course, share the earcommunity.org website. But I want to conclude the episode today. Hope, reassurance to parents. Many parents who hear your podcast episode, they may be new to having a child with microtia, atresia, or hearing loss, and they might feel anxious. They might be asking themselves, you know, what does the future hold for my child? What message of hope and even, you know, practical reassurance do you have for them right now?

Melissa Tumblin:

You know, when Allie was born and we were in the delivery room, oh, it it was so scary. You know, everyone we go through a similar to same situation when something happens at the birth of our child. And you know we were so happy she was with us, but at the same time, my heart was breaking inside because we didn't understand what was going on. And I look back to that first day when Allie was finally here. All my emotions, all the emotions that we go through as parents, and the fear and the worry and the concern and even worrying about the future, but it will be okay. And it's hard to say that. I feel like I can share that because I've gone into 16 years now of Allie's life. I've seen so many others just like her, and I've seen her grow and develop, and her little personality start to develop. You get to see the strengths of your child. And, you know, it's important at first that you are their best advocate as the parent, but they will also learn to advocate for themselves. And, you know, they're absolutely worth fighting for. You find the best for them. And most importantly, just love them, treat them like any other child. Definitely a great circle of friends always helps, but they too will find their way. And just don't be so hard on yourself. You know, as a parent, a lot happens throughout our journey of life, and things are always thrown at us. It's just you have to find a way, you know, to manage it. And you also have to find a way to make the most of it. So just it will be okay and enjoy them while you have them because they grow up so fast.

Blaise M. Delfino, M.S. - HIS :

Amen. Thank you so much for that, Melissa. And you know, I can't help but think when you started the Ear Community Facebook group, I mean, 15 years ago, Facebook and community pages were not like they are today. And just the evolution of the technology and the platforms to really feel so connected to others. That's what I love so much about social media, is you are able to tap into and find a community of individuals going through what you are going through. So you have earcommunity.org. What is the name of the Facebook group? Is it also Ear Community on Facebook?

Melissa Tumblin:

I actually have five support groups.

Blaise M. Delfino, M.S. - HIS :

Love it. Okay, let's hear it. Yeah, so how how can we find them? And we will link them in our show description. Yep.

Melissa Tumblin:

Okay, so we do have an ear community Instagram page as well. You can find us there. It's earcommunity org through Instagram. And then on Facebook, that's that very first support group that I started 15 years ago, till this day remains the largest and most popular group. We have over 12,000 people in it. It's plain and simple. It's called the My Crocha and Atresia support group. And then, of course, we have our organization's page. So we have an ear community page on Facebook. And then I tried to think of everything that our community would want or need. So we have a pen pal group for the kids. So it's ear community pen pals.

Blaise M. Delfino, M.S. - HIS :

It's amazing.

Melissa Tumblin:

And we also have a bone conduction hearing device group. And then there's one more. This is the other one. It's um Microcia and More by Ear Community. That's our other major Facebook group page. And the reason for that was, you know, some of our children don't have just Microcia and atrasia, or it's things like in the beginning, you know, torticollis, speech delays, you know, low muscle tone, all the things that come along with babies sometimes. And then some of the members of our community have additional syndromes, you know, charge, golden heart syndrome, treachery collins. So that was a page that I created for the parents that are struggling a little more than the average Microsia and Atresia families. Sometimes it's just hearing loss, and sometimes it's a whole bunch of other things thrown at you as well.

Blaise M. Delfino, M.S. - HIS :

So and Melissa, what's so incredible? I mean, everything that you do with this ecosystem of raising awareness of microcia, atresia, and more as it relates to communication sciences and disorders as a whole, I mean, you've built longstanding partnerships with device manufacturers, advocacy organizations, medical professionals. What's one example of a collaboration that's really made a notable impact in your community?

Melissa Tumblin:

Absolutely. So it truly is the collaboration with my organization's events. Thanks to sponsors and medical professionals that I know, I was able to find a way not only to involve everybody, because we all are community, but it was an opportunity to have families come to a relaxed environment where the kids can play and they can also be educated at the same time. You know, so we have the hearing device manufacturers there. They can educate on hearing loss. I have seen families where I'll never forget, there's two examples that happen at the events, and I couldn't do this without the sponsors, right? And help with funding. So at the events, I've seen a little girl. I remember her mom coming up to me saying, Oh my gosh, Daddy's wearing a ponytail for the first time. Because a lot of our kids, you know, they're self-conscious about their missing ears. But by coming to our event that day, she saw so many others just like her. There's no staring, there's no asking questions. We're all in the same situation. It's just a day for the kids. And so I've seen children transform just from coming to our event, realizing they're not alone, that there's someone else out there just like them. And then on the hearing loss side, I've absolutely seen, I remember this family. The husband and wife were whispering right beside their child as they were trying on a bone-anchored hearing device. And their son looked at them and said, I heard that. And the mom started crying because I think it was a reality check for her that she did not realize her son maybe was having some struggles with hearing loss until he tried a bone-anchored hearing device. Because it's important to remember the community members that I serve, they don't know what it's like to hear through two ears. They only know what it is like to hear with one ear. Or if both ears are missing, you know, maybe it's muffled. To them, that's their norm. And to finally have access and hear things clearly, I've seen a lot of emotions at my picnic, just families crying happy tears. You know, they just didn't realize it. And again, that goes back to, you know, maybe they don't have access to insurance, maybe they aren't able to go or pay, you know, to go to a medical professional. But at our events, we have everybody. And I couldn't do this without everyone, without their help. And so that's what makes it so important and beautiful to have a community and be able to bring it together and involve everyone.

Blaise M. Delfino, M.S. - HIS :

So and Melissa, your why, I mean, is it's Allie, and it's incredible the work that you continue to do. And I'm honored to have had the opportunity to interview, to sit down with you today. I know we connected, you know, a few weeks ago just to kind of talk about this episode, update as it relates to Allie's act, and definitely felt moved by by your story of let's continue to collaborate and get this message out there because these children who are born with microsia, treesia, they need that voice. And your community absolutely is that voice and will continue to be that voice. Melissa, thank you so much for the work you're doing, not just as a mother, but really as a true advocate for advocacy, access, and equity in hearing health care.

Melissa Tumblin:

Thank you.

Blaise M. Delfino, M.S. - HIS :

You're tuned in to the Hearing Matters podcast. Today we had Melissa Tumblin of Earcommunity.org. Today's conversation is such a powerful reminder that advocacy often starts in the most personal way possible. At home, with one family, one story, and one child. What began as a mother trying to help her daughter has grown into a movement that's shaping legislation and changing how our industry thinks about hearing care. For our listeners, if you've been inspired by Melissa's story and want to support Ali's Act, visit Earcommunity.org. There you'll find resources for families, ways to contact your elected officials, and information on how to make your voice heard. And for my fellow hearing care professionals, remember, awareness starts with us. Every conversation with a patient, every educational event, and every story we share helps move this mission forward. Because at the end of the day, access to better hearing isn't just about devices or coverage, it's about dignity, opportunity, and belonging. Melissa, thanks so much for being a part of this conversation and for reminding us that one family story can truly change the world. And to our listeners, thank you for tuning in to the Hearing Matters podcast because your hearing and your voice truly matter. I'm your host, Blaze Delfino, and until next time, hear life's story.

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Blaise M. Delfino, M.S. - HIS

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