Hearing Loss in Children
In today’s episode, we spoke with Valerie James Abbott, the author of the children’s book Padapillo. Padapillo explores the emotional process family members often experience when a young child is unexpectedly diagnosed with hearing loss. Valerie shares her family’s real life journey too. After her daughter Bridget was diagnosed with hearing loss in preschool, the Abbott family did all they could to ensure Bridget's success.
Dr. Carmen Jamis, a pediatric and implant audiologist, also joins us on the episode to provide expert advice for families. Whether you suspect your child may have a hearing loss, or you’ve already begun the process of diagnosis and treatment, Dr. Jamis has advice you need to hear!
Steve Taddei: As a society, we're pretty aware of hearing loss. And I think for the most part, we associate it with people who are older. However, hearing loss affects all ages - even children. It's clear that there are communication problems when someone asks "what" or "huh". But a newborn child obviously can't do this.
So what if you are an expecting or new parent? How do you know if your child who can't even speak yet is not hearing properly? Are there other signs? What can be done if there is a hearing injury, and will it get worse over time? There are so many questions and we set out to answer them in this month's episode by sharing Bridget and Valerie avid story.
We also spoke with Dr. Carmen Jamis, who is a pediatric and cochlear implant audiologist.
Ad: Support for the HearingTracker Podcast comes from Nuheara. Nuheara is transforming the way people hear by creating personalized hearing solutions that are multifunctional, accessible, and affordable.
Steve Taddei: Can you hear me now?
This is the Hearing Tracker podcast from HearingTracker.com.
Valerie Abbott was living the normal loving family life, a house, husband, and two daughters. Everything was as expected; a happy family and Bridget, their youngest daughter had developed some interesting and entertaining characteristics.
Valerie: She had invented her own language. She would say things like, you know [indistinguishable] which meant, "look, there's a frog in the pond" and we didn't notice that that was not at the age that she was developmentally, correct.
We had invented the Abbott family sign language. We did not realize that we had done that, but we had. And so we were using both a visual language as well as oral language to help communicate with her. It was always, you know, Bridie, come up here, come up close to mommy. And then can you go to this room, you know, to your bedroom and go get your, go get your gloves. You know, and I would be put, you know, showing emotion for gloves or go put your shoes away, you know, go put your shoes away. And it worked, it worked really well. She became a fluent lip reader, and if she could see our face and see our bodies, she could understand most of what we were trying to convey.
Steve Taddei: In hindsight, it makes sense that Bridie wasn't hearing properly, but amidst their everyday lives in development, it wasn't clear. So naturally the family adapted to forms of communication that worked best.
Valerie: Once she went into preschool, it became pretty obvious to them. Something is up. So that's kind of how we got to that realization. When we finally realized what had happened. And that we didn't notice. I would say it was an incredible mixture of guilt and panic.
We went from being just a normal family with two young kids going about the day to people who weren't sleeping. We didn't have answers. Questions like: When did this happen? Why did this happen? How, how did this happen? Is it progressive? What does that word mean anyway? No one could really give us any solid information, but we still had to make decisions.
Steve Taddei: This level of uncertainty is completely understandable given any unexpected medical news. However, most children with hearing loss are born to parents who have normal hearing. This means it is simply unchartered territory and they need extra guidance for the next steps, and to understand the individualized needs associated with hearing disorders.
Valerie: The first official test that was done was done in a booth with her on my lap. And that was successful.
Steve Taddei: Tests like the one Valerie just described are called behavioral. And this can be a tricky test for younger children. It requires you and your child to sit in a sound booth, looking straight ahead. Your child is then conditioned by an audiologist to look left or right whenever they hear something. If they do this properly, they're rewarded to reinforce repetition of the task. It's tricky because you have to remain quiet and relatively focused on listening as we try to find some of the softest levels they can hear.
Sometimes further testing is required to double check these results. This leads to an auditory brainstem response or ABR. The ABR objectively measures the electrochemical response of your child's brainstem when sound is introduced to the ear. This can be more accurate as it's physically measuring brainstem activity.
Valerie: When we went forward and had a sedated ABR. And the ENT came out into the waiting room of the hospital and said, I have good news and bad news. The good news is that the ABR reflects the exact same results we got from her in the booth, which means she's a really good test taker and we shouldn't have to do this again. And I said, we shouldn't have to do this again? And the word progressive, possible progressive came up and the idea that she would be tested frequently to determine, is this a progressive loss? And then he said, the bad news is the test is correct that she has sensorineural hearing loss, bilateral, and that's that.
When he left, she was still in recovery and I just fell to the ground. It was awful. It was a memory that is seared into my brain.
Steve Taddei: The Abbott family story doesn't stop there. It actually takes a rather positive turn. Years after this chapter, Valerie wrote a children's book based on their family's journey with discovering hearing loss.
Her book, Padapillo is told from the perspective of Bridie's sister, Mary Claire. So rather than me telling you the rest of the story, let's dive between the pages of Padapillo and hear what happened next.
Mary Claire: The ride home from the doctor's office took forever. I was so mad. Why hadn't she told me she couldn't hear me. I knew the listening game must be wrong. I knew I had to test her myself as soon as we got home.
Bridget come play with me, I said, walking her into my room. Can you make a block tower? Here, use these. Bridget ignored me. Here blocks make a tower, I said, pointing to the bucket of blocks. What? Bridget asked. Let me show you, I said flipping the bucket upside down.
One block. Two blocks. Three blocks. Bridget nodded, and started to build her own block tower. I slowly moved towards my toy chest. I had to find something to prove Dr. Anna and her test were wrong. I had to prove that my sister could hear just fine and that she was just plain weird. Ah, ha, I whispered. I turned around. I stood behind my sister and then... [bell ringing] .... Bridget didn't move. She didn't look up. She didn't turn around. She didn't stop at all. She just kept building her block tower.
A few weeks later, Bridget's hearing aids were ready. We all went back to see Dr. Anna the audiologist. Bridget wiggled in her chair, Dr. Anna put the new pink hearing aids in and around her ears. They fit perfectly. These are so pretty. How do they feel, Dr. Anna asked. My sister's eyes grew big and wide. I hear you. She said, I hear you. We all laughed. Mum cried a little bit.
Dr. Anna made some adjustments to the hearing aids. Then she said we could go home. Bridget was very excited. She ran down the hall and straight out the door. She wanted to show everyone her new hearing aids, but then Bridget stopped. She looked around. She grabbed dad's leg. The noise. Stop the noise.
Bridget began to cry. She grabbed at her ears and started to pull her hearing aids out. I looked around at all the moving cars and trucks and people. I didn't hear anything strange. I just heard everyday thing.
It's all right, mom said, these sounds are new to you. Don't be afraid. She smiled and picked up my little sister. We headed back to Dr. Anna's office. I thought I might see you back here, Dr. Anna said. Was it loud outside? Bridget nodded her head. She freaked out, I said.
Bridget wiped tears from her eyes. Dr. Anna made a few more adjustments to the hearing aids. You are so brave. Keep wearing these every day. It will get easier. I'll see you again very soon.
Steve Taddei: When we come back from the break, we'll hear from Dr. Carmen Jamis. We'll also learn just how far the Abbott family has come. However, before we get to that, I wanted to ask you a favor. Our goal with the HearingTracker podcast is to help those with hearing disorders.
So can you think of just one person who may benefit from hearing this story. If you know someone, please share the episode with them. It would mean the world to me. Hopefully the topic and resources mentioned can be to their benefit
Ad: Support for the hHearingTracker Podcast comes from Nuheara. Nuheara is transforming the way people hear by creating personalized hearing solutions that are multifunctional, accessible, and affordable.
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Hopefully by now, it's clear that hearing loss can cause very unique challenges in children. I wanted to speak with a pediatric audiologist, someone who specializes in the diagnosis and treatment of childhood hearing loss. What else can be done and what resources are out there?
Carmen Jamis: The current statistics say that it's about two to three of every 1000 children born in the US will have some detectable hearing loss at birth.
Steve Taddei: Dr. Carmen Jamis is a pediatric and implant audiologist at the Cleveland Clinic.
Carmen Jamis: Another really interesting statistic about that is that 90% of children with hearing loss are born to hearing parents. So a lot of parents who are raising children with hearing loss don't have any previous exposure to this world or trying to raise a child with hearing loss.
Steve Taddei: This is something we've talked about before. It's important to consider the risks of untreated hearing loss. In adults, we mainly focus on cognition, interactions with other health issues, and improving overall quality of life. However, in children, there's the added consideration of language development, which occurs in the first few years of life.
Carmen Jamis: The most prominent effect that it will have if it's untreated or undiagnosed is going to be language deprivation. If the child's not receiving the input, they're not going to produce the output.
I think it's really important that some people know that not every child is going to be a hearing aid or a cochlear implant user, the most important thing that we can do for these kids with hearing loss is give them really good language models and input.
Steve Taddei: Fortunately, there are many standards in place to speed up the process of diagnosis and treatment. That way any effects of language deprivation are minimized.
Carmen Jamis: The current Joint [Committee] on Infant Hearing recommendations are this 1, 3, 6 model. That means we want children to have received a hearing screening by the age of one month. We want the hearing loss to be diagnosed by three months. And we want the proper interventions in place and going by six months.
That was the old way of thinking. I know that currently most educational and pediatric audiologists are actually shooting for a 1, 2, 3 model. So meaning screening by one, diagnosis by two months, and then intervention in place by three months. As you can imagine, the earlier the intervention, typically the better outcomes for the child.
If they're going to be using amplification, we want that amplification on as quickly as possible. If we're going to be signing with them, we want them to be signing as early as possible.
Steve Taddei: Protocols are in place to make sure newborns receive a hearing screening before they go home. This is generally performed by a technician within the first few days after birth. If a baby fails this test, they're referred to an audiologist for a diagnostic hearing evaluation. This will be the ABR or auditory brainstem response that we talked about before.
Carmen Jamis: Depending on the results of that diagnostic evaluation, the audiologist will make recommendations as to how to move forward. Maybe to see an ear nose throat physician, because they're concerned that there's something medically going on that may be able to be resolved by an ear nose throat physician.
Or if they think that it's a permanent hearing loss, they will also refer to an ear nose throat physician to get that child cleared for the use of amplification. And they will probably refer the family to an early intervention program in their state or county.
After that the family has some important decisions to make. Are they going to utilize the amplification? Do they want to do sign language with their child? Do they want their child to learn how to listen and talk? Those are all different choices that families have to make. And they're big decisions but they have to be made pretty quickly.
Counseling is really important. And talking and really getting good information is really important during this process. If families choose amplification for their babies, they should expect a pretty busy first year. They're going to need to get fitted with hearing aids. The ear molds, which are the custom piece that connect the hearing aid to the ear, need to be remade often because babies grow so quickly during their first year of life.
And then they're going to get referred to places like genetics, ear, nose, throat, ophthalmology, to make sure that the baby's vision is normal. It's a lot. Things do slow down after typically the first year, but that first year can be a lot for families.
Behavioral health and mental health should never be something that people are afraid to seek out. I don't think there's any shame in saying that they're feeling overwhelmed or that they need help. So things like social work, those shouldn't be bad words. Mental health and social work. Those are things that are in place to help families who need it.
If it's a parent listening right now and they're feeling totally overwhelmed, seek those things out. But also I do think that just meeting another person and maybe seeing an older child and seeing how they've kind of grown up. Try to relate and see what the future for your child might look like. Sometimes it's really relieving.
Steve Taddei: All of these steps like timely diagnosis, treatment, early intervention programs, hearing aids, American Sign Language. They do make a difference. In fact, time and time again, research finds that parents are the biggest predictors for success for children with hearing loss.
And if we think back to the Abbott family and Bridie, we learned about the diagnosis of her hearing loss and that she was fit with hearing aids so that she can better access verbal language. After all these years, you'll be happy to know that she is still doing well.
Valerie: She really does see it as a benefit. Her hearing loss. She sees the ability to turn off the world when she wants to, to hear what she wants to. Technology has certainly made it very easy for her Bluetooth-wise, to easily access music, which she absolutely loves. She's played violin for 11 years and upright double bass for three. And we are not a musical family at all. I don't know where that gene came from.
Steve Taddei: To me, this is such a touching part of their story. Here's a child with hearing loss. There's uncertainty, fear. And yet she's able to learn an instrument and be a part in the school band. It's a testament to the technology available and the difference a supportive family can make.
Valerie: What I am hoping is that Padapillo is something that is kept in the drawer of pediatric audiologists so that when a child is officially diagnosed with hearing loss, and hearing aids are part of the conversation, that they have it right there, ready to hand to them with the audiogram to say we just, we just unloaded a lot and you are going to have a lot of questions after you leave here. And I want to answer them.
I think we all have a way of improving the experience that families have leading them to a diagnosis and then leading them through that journey and figuring out a way that we, meaning all of us, can do a better job of that. It's really important because if we do a better job of holding space and of supporting families without bias, those children are going to thrive. They really, really are.
I hope that we all think about what could I be doing better? What's one thing I could be doing that would help improve the outcome for the child.
Steve Taddei: If you or someone, you know, as concerns regarding a child's hearing contact an audiologist today. If you need assistance, there's the Early Hearing Detection & Intervention group known as EHDI. There's also Hands & Voices who we've spoken with before on a previous episode. There's the Alexander Graham Bell Association. There's the National Association of the Deaf, and there's also large communities on social media filled with like-minded parents willing to help.
I'd like to thank Valerie Abbott and her family for letting us hear their story. If you'd like more information or to speak with Valerie directly, please visit her website valeriejamesabbott.com.
I'd also like to thank Dr. Carmen Jamis for speaking with us, sharing her expertise, and doing what she can to help children with hearing loss.
The HearingTracker Podcast is hosted by me, Dr. Steve Taddei. Each episode, we reach out to people with hearing difficulty and or industry leaders to talk about the hearing system, innovative technologies and what's to come. This episode was written, produced, and sound designed by me with help from Abram Bailey, Bruce Smith and TJ Belek.
If you liked today's episode, please consider leaving us a review and sharing it with someone you know. If you have a unique story related to your hearing, or if there's another show topic you'd like to hear, share it with us and send a line to Steve@HearingTracker.com.
Finally, you can find much more helpful content and keep up to date by visiting us at HearingTracker.com. Thanks for listening.