- According to the Center for Hearing and Communication, hearing loss affects approximately 48 million people in this country.

Hearing loss can occur at birth or develop later on at any age and in varying degrees.

Causes like illness and environmental factors can lead to hearing impairments in children and adults.

On this episode, we'll speak with a medical expert, and I'll also have two special guests who were both born profoundly deaf.

Welcome to A Su Salud - "Cheers to Good Health".

I'm your host, Genesis Ortega.

We're broadcasting from inside the PPL Public Media Center in Bethlehem, Pennsylvania.

My first guest is Dr. Brittany Hilderbrandt, director of audiology at St. Luke's University Health Network.

Thanks for joining us today, Doctor.

- Thank you for having me.

- Let's get started here.

Tell us about the science or the medicine behind audiology.

- Sure, so there's quite a lot, you know, it's a small part of the body, but there's a lot that goes into it.

Our ears, the part that you can see on the outer part of your body are the part that simply collects the sound.

And then, there's a lot more detail that happens once it travels through your ear as a system, and then travels up the auditory nerve to the brain, where it's then processed as sound the areas, of the brain that are designed for speech and language, they differentiate between speech music.

So there's a lot of science going on behind it.

And it's all very interesting.

- When it comes to talking about hearing loss, what are some of the causes that people may experience when they lose their hearing?

- Sure, so causes of hearing loss can range and vary person to person.

Some people are born congenitally deaf.

Others acquire it over time.

The most common cause of hearing loss is aging.

And what happens is, is as we start to age, the wear and tear of our hearing organs start to be affected.

And what happens is we have these tiny hair cells that work inside our hearing organ, or our cochlea.

And, as sound waves travel through the ear, these little hair cells, they bend.

And when they bend, they send an electrical signal up to the brain, which is then decoded and differentiated between speech, music or noise.

But over time, those little hair fibers, they stop bending.

And when that happens, we don't get those electrical signals sent up to the brain.

And then, that's when we start to have hearing loss.

We're starting to miss out on different parts of speech.

And most commonly, when we tend to get older, we lose our higher-pitched hearing first, which is actually where we get speech understanding.

So, a lot of times in older adults, they can hear people talking to them, but they can't necessarily understand the fine detail of speech.

So, a very common cause of hearing loss is aging.

Other causes can be continued noise exposure, head trauma, any viral infections like meningitis or shingles, phototoxic medication that can be taken such as high-dose antibiotics or even some chemotherapy treatments.

And additionally, there are syndromes that have hearing loss associated with hearing loss as well that can stem from birth or be acquired over time.

- I remember when I had my son, the nurse came in to do a hearing test on him.

So, how did those hearing tests work?

Do they range from an infant to an older adult?

- They do.

There's quite a difference in the way we test based on age.

So, with infants, we do what's called an auditory brainstem response test.

This test is performed on infants or small children while they're sleeping.

And what we do is we actually attach small electrodes to their forehead and behind each ear, and then, we actually monitor how the brain responds to sound as it's traveling through the system.

And we can actually get hearing sensitivity in each ear on infants.

And then, as we start to get older into kiddos, we actually start playing games with them where they listen to sounds and they'll throw toys in buckets.

It's actually pretty fun to do.

And then, I'm sure most people are familiar with the standard hearing tests where if you hear a beep, you raise your hand.

So, there is a quite big range of how we test hearing, again, based on the age.

- When we talk about the normal range of hearing for adults, without getting too much in the weeds, can you give us an example of what that looks like in decibels?

-Sure, so normal hearing for adults ranges from zero to 20 decibels.

And to, kind of, give you a real life idea, or example, normal conversational speech is spoken at around 50 to 55 decibels.

And then, to give you another example, fireworks are usually around 120 decibels.

So, that kind of should give you a range of roughly where normal hearing would be, compared to normal conversation to very, very loud sounds.

So, usually when we have adults that are having difficulty communicating with their spouse, their coworkers, friends or family, that's usually a pretty good indication that we are no longer in that normal range.

Because, again, if you have normal hearing in that 0-20 decibels and can hear normal conversation, we probably have some hearing loss.

- What are some of the options for those who experience hearing loss?

Are there surgical options?

I know there's hearing aids.

- There are.

So, most as, I mentioned earlier, sensorineural hearing loss is the most common hearing loss and it is typically due to the aging process.

Sensorineural hearing loss is a permanent hearing loss, it's typically not corrected by surgery or anything like that.

It is referring to damage that's done to the hearing organ or the auditory nerve.

In those situations, people can seek management through hearing aids, which essentially will give them back some of those sounds that they're missing.

There are some surgical options, but those are for very specific types of hearing losses.

There's surgery such as like ossicular chain repairs, which are the bones of the ear.

But other than that, more likely, it is going to be managed or treated with hearing aids.

- Now, Doctor, when you talk about hearing complaints, I think about the Hispanic and Latino community, and how language barriers might play a role in that, and how it might be a little bit more frustrating.

So, do you hear from Hispanic patients?

Are there any more types of complaints that you're hearing from this community?

- Sure.

We do actually see a large population of Hispanics here at St. Luke's.

We do our very best to try to communicate with them, whether that be having them bring along a family member to help translate and communicate, to certainly break down those barriers so that we can make sure the information that we're sharing is being understood, so that we can move forward with an appropriate treatment plan.

Here in the office, we have people that we can utilize as well for interpretation.

We also have an iPad that has an interpreter service that we're able to utilize.

And one of the good things about that is the iPad actually gets relatively loud.

So, it's also when we have patients that come in that there is a language barrier, that can be difficult in itself.

But then if that patient has hearing loss, it does tend to make things a little bit more complicated.

So, again, we do try to accommodate that the best we can, but the complaints themselves tend to be the same.

They're not hearing things clearly, they're missing out on some of the different parts of speech.

But relatively, the complaints are the same across all the groups.

- Thank you so much for your time, Dr. Hilderbrandt.

We're running out of time here, but I want to end the segment on this note.

As an audiologist, what's your most helpful piece of advice for our viewers?

- Sure, that's a great question.

So, I would say the most helpful advice would be hearing protection, with spring coming and getting outside, any power tools, doing yard work, you certainly want to make sure that you're wearing protection to preserve your hearing and really protect it.

Additionally, there is no right time to have your hearing tested.

There's no specific age.

Anyone and everyone can and should have their hearing tested, even if it's to establish a baseline.

That's helpful information.

So, moving forward, we can see if there's been any change or shift over time.

Thank you so much, Doctor, for your time today.

My next guest is Mayra Castro, a New Jersey resident and the daughter of Cuban refugees.

When Mayra's mother was pregnant with her, she contracted measles, and Mayra was subsequently born profoundly deaf.

She's joining us with the help of an American Sign Language interpreter whose voice we will hear.

Mayra is the founder and director of Camp Sol of the Deaf, located in the state of New Jersey.

She's also an advocate for deaf children of color from low-income families to attend camp.

Thank you for joining us today, Mayra.

- Yes, thank you.

- Let's... - Really honor the program that you're working with.

I really do appreciate it.

- Let's start with you.

Please tell us about your early childhood growing up in the 1970s, and what it was like trying to communicate with family and friends.

- Sure, I'm happy to share my story with you.

And my educational background, as well.

When I was growing up, I was at school and I was at home and, you know, clearly I was born deaf and I grew up in an oral environment where there was no sign language.

It wasn't allowed, actually.

So, as I was growing up, I didn't really have any exposure to sign language or to any deaf adults who could really model, be role models for me, as I was as I was growing up.

So, I really had to do a lot of self-analysis to understand my own identity.

And I really had none for quite a long time.

It wasn't until I was older till my identity actually was formed.

So, I did interact with adults, I had brothers and sisters, two, and the three of us, we used lip - speech reading, and I tried to understand what people were saying around me, but there was no real actual fluid communication.

I did a lot of guesswork.

So, even in my home environment, it was very frustrating to try to understand what people were trying to communicate with me.

I tried to use home signs with family, signs that we invented with my parents.

Also, we spoke Spanish in the house.

That's what was the primary language for me growing up.

I'm not an oral person myself.

I don't use speech to communicate.

So, when I finally got to college at the National Technical Institute for the Deaf in Rochester, where there were a lot of deaf people, a huge student population, I finally recognized what it meant to be deaf.

It wasn't until I arrived at that institution, I'd been mainstreamed my whole life where I was the only deaf person in a hearing world.

But to finally be around so many deaf students in a fully-emerged... And to be fully immersed in a signing environment, it really helped me to understand my identity.

Although it hadn't been formed yet, I had to do a lot of analysis.

So, years later, I finally decided to go to Gallaudet University in Washington, D.C. And there was a linguistics program that was just really amazing there.

And that's where I finally really began to understand who I who I am as a proud deaf... ...person and not to see myself as handicapped.

It was such a great education, such a great experience.

I finally graduated 1997.

My major was psychology, and I worked almost 30 years in a many different industries, counseling, family therapy, across the spectrum of psychology and therapy work.

And so, I had an extraordinary amount of professional growth connecting with the deaf community.

So, I've been very, very active and I continue to be very active in the deaf community.

And I noticed that myself, as a woman of color, a Spanish woman, I got greatly involved in the Spanish community, as well.

So, I've been doing workshops and traveling, and meeting so many diverse people.

I haven't yet decided to...

I hadn't yet, at that point, decided to set up Camp Sol.

I'd been working as a camp counselor at Camp Mark Seven, which was a camp...

Which is a camp for the deaf in New York.

It was about five hours away and I would stay there, and as I was observing, I noticed that most of the young people there were white, there were very few children of color, very few.

So, as I observed that, I really recognized that that needed to happen.

And that's when I decided to establish Camp Sol.

So ,I'm the director and the founder.

And the reason why I set this camp up is because I've seen that the young people of color, that their parents, who it's really an extraordinary struggle for them to communicate.

There are so many barricades.

And that 75% to 80% of the parents don't sign.

So, they can't communicate with their children very well.

And I can see how confusing that can be and frustrating, and how few have any real formed identity for themselves.

So, the BIPOC culture in general, I find that the children there really, really didn't have the opportunities that the white children had.

So, that's when I decided, I had to set up that camp.

I felt that I really needed to make sure that those young people of culture had an opportunity to meet each other and had an opportunity to really have experiences.

They didn't really want to do those kinds of changes to really understand themselves and do that kind of analysis.

But through that learning, using ASL, getting an understanding of who they were, understanding their culture, not just being deaf, but there's so many different aspects that are incorporated into that and internalized.

And I wanted to make sure that they had the kind of exposure and socialization that could give them those opportunities to be able to develop those identities for themselves, and also to develop leadership skills, which is extremely important.

So, I encourage young people of color to become better selves, to have better lives, and to understand themselves as being on an even footing with everybody else, to really give them opportunities.

- That's wonderful, and very insightful, Mayra.

You mentioned identity so many times, and I think it's a relevant and relatable topic to talk about.

But when it comes to other people who are struggling, whether there are deaf, you know, or have a family member that's affected by loss of hearing, how do you recommend that people can be a support system and help them to find their identity?

- Oh, that's a good question.

OK, well, we've developed a form, actually.

It's a communication for different communication modes before they come to camp, to make sure that we're... We really want everybody to feel comfortable with the communication access.

So, some of the families speak English, some Spanish, and we have that translated for it.

So, it is accessible for everybody.

A lot of the families don't sign, and they understand that they don't understand what a summer camp really looks like.

So, it's extremely important for us to give them a sense of what everyday life looks like.

Some of the kids that come to camp don't sign.

They've been in oral programs, but we don't turn away anybody.

We accept everybody regardless of their communication modes.

So, it's very important not to deprive anybody of language.

And we really value what everybody comes with.

Really, the point is culture.

So, you need to recognize that there's linguistic cultures, but there's also deafness as a culture.

And some deaf children have cochlear implants.

And so, they're going to be using their hearing more, and it gives them a very specific kind of attitude.

And I notice that they don't really have necessarily the kind of deaf pride that some of the other children have.

But once they see deaf role models, it really gives them an opportunity to understand their own deaf identity.

And so, we're not criticizing anybody.

Nobody's communication is lesser than anybody else's.

We provide linguistic access, and that's really it, and that's really important for anybody who has a deaf family member.

- Very insightful conversation.

I really enjoyed speaking with you today, Mayra.

You are certainly a role model, and I really appreciate your time with us today.

- I just wanted to add one more thing, if you don't mind.

- Go ahead.

- I just wanted to say that...

It's very important that if anybody wants to get in touch, text or email, if anybody has a child that they recognize isn't happy and needs more exposure to sign language, that it's very important to see if you can't send them to summer camp just to make sure that...

They can come for the day, I mean, whatever works for anybody, if you could see the experience of these children, it would give you chills, the kind of change they go through over the summer, their perspective alters, and so does the perspective of the parents, because they recognize that... ...these changes occur, so it's very, very important to have these conversations, because the family really does get a chance to see that kind of growth.

- That's wonderful.

How can people get in touch with you?

We have great social media presence.

We have a Facebook page, Instagram, Twitter, and there's also a website, Camp Sol for the Deaf, and not everybody who's involved is deaf.

But it's for deaf and for BIPOC, as well, and we disseminate as much information as we can, but you can contact us.

We also try to get in touch with different schools.

We have staff.

We have counselors.

And we continue to blog and vlog on our Facebook page, So, there's essentially advertising there, if you needed to see any of the publications that we have.

- Wonderful.

Thank you again.

I appreciate your time today, Mayra.

- Thank you very much.

I appreciate your having me.

I really enjoyed it.

Thank you.

- My next guest is Tabitha Barnes and her 6-year-old son, Alex.

Alex was born with a profound hearing loss in both ears and, in 2018, underwent surgery for cochlear implants that changed his life.

Thank you, Tabitha and Alex, for joining us today.

- Thanks for having us.

- Tabitha, let's start at the beginning.

When did you first learn of Alex's hearing loss?

- So, the day he was born, actually.

We found out right after you give birth, they send the kids to do some Apgar testing, and he failed his screening in the hospital while he was in the NICU.

And then, they redid the testing before we went home, and he also failed subsequent screenings.

And it kind of just snowballed from there.

- As a parent myself, I can't even imagine what you felt at that moment, especially after just giving birth.

I mean, how did that news make you feel?

- It's, you know, it's uneasy news because you're not sure, they give you a possibility of things it could be.

So we ended up down at trial to make sure it wasn't, like, a punctured eardrum or water in the ear, or some kind of pressure issues, or broken ear bones.

So, we had to go through a gamut of testing.

But it all ended up here with the cochlear implants.

- You know, before the surgery, Alex wore hearing aids.

Tell us about that experience.

- Right, so because Alex also has agenesis of the corpus callosum, he wasn't able till he was about two to undergo general anesthesia, which is what they needed to do the urine test to check his neurotransmitters.

So, he had hearing aids.

And if you know about hearing aids, what they really do is they amplify sound.

But for someone who doesn't need to hear the sound amplified because the neural pathways are not transmitting sound, it basically sounded like him living inside a very loud fishbowl.

So, he had no speech prior to having his cochlear implant.

- Well, Alex, since you want to talk, tell me about how is first grade for you?

How do you like it?

- How do you like first grade?

What's your teacher's name?

- Miss Randall!

- And what school do you go?

- Nice, what do you like to do with your friends?

- What sport do you like to play with your friends?

- Um, how about baseball?

- Baseball.

- Tabitha, tell us about Alex's condition and what a cochlear implant does.

Clearly it doesn't stop him from talking.

So, he has auditory nerve neuropathy, which basically means the auditory nerves inside of his brain do not work without the stimulation from the cochlear implant.

So, the cochlear implant, and I'll show you, is a device that hooks onto his ear and, turn your head, and then there's this portion here, which is a magnet.

So, this connects to his head.

Without this on, he hears nothing.

So, there's no sound.

So his processor, this is his processor.

He has an N7, and he has a Kanso processor.

When it is connected, he's basically like a refrigerator, so his magnet is inside the processor, stimulates the sound into his cochlea, and sends the signal to his brain for reception.

- At the time, were you advised of any risks involved?

- So, there are some risks, but for us, the risks outweighed the possible positives that he would make.

So, the risks, which is why we did one surgery at a time, so in 2008, he actually had two surgeries in his left ear.

He had profound hearing loss, which, worst case scenario, was he wouldn't hear anything.

Ad he was not hearing anything out of that ear anyway.

So, that's why that was the ear we started with.

So, when you do the implant, there was a risk of possibly further damaging the bones during the surgery.

And other than that, you know, there's issues where the devices could possibly malfunction, but we did not experience any of that.

We had all of the best possible options.

- Let's show a video, you shared with us a video of Alex counting to ten after surgery, something he was unable to do before.

Let's look at that now.

- Ready?

- One, two, three, four, five, six, seven, eight, nine, ten - Yay!

- at was such a sweet video.

Tabitha, how did that make you feel, to hear your son counting and know that he can now hear you?

- That was super exciting.

And honestly, that video is almost three years to the day.

So 2018, the weekend of Easter was when he received his processer, and he basically... Like, words and language just started flowing out of him.

And I knew at that point, we made the right choice.

I know there is people who live in the deaf community who live their full life happy, successfully using sign language and other kind of cues.

But that just wasn't the fit for us.

He was frustrated in that world.

We were frustrated in that world.

And just seeing gains in learning so quickly was amazing.

And I don't know if you noticed in the video, but at that point, he only had one ear done, the other ear, his right side was still with a hearing aid.

- Wow.

Is there anything else you might like to say or share with our audience about this experience, and how it changed your lives?

So, it's scary, you know, anything medical and anything surgery-related with your child and the child's brain, it's scary, but you have to look at it from the best possible outcomes for what fits your life and your world, and how I didn't want my child to not hear me ever... Like, I could sign him "I love you" all the time.

But I wanted him to hear my voice and hear me say "I love you," and I wanted to hear it back.

So, as much as I thought this was selfish in the beginning, because he wasn't able to decide, I know now, looking back, that this is the best scenario for him, and these were the best decisions we could have made for him.

And we have a team of people that, from his doctor who does the surgery to his audiologist, to his hearing and speech specialist, who really are our village of support.

And it's out there and it's possible.

And as scary as it is, you really need to...

If it's something you want, go in 100% full faith, full steam ahead, and the benefits will definitely outweigh the risks.

- Thank you, Tabitha, for joining us.

And thanks, Alex, too, for joining us for the little time that we spent with him.

- Can you come say "bye"?

- Bye!

- "Goodbye, everybody!"

- Goodbye, everybody!

-Bye, Alex, bye, Tabitha.

Thanks again for joining us.

- Absolutely.

Have a great night.

Thank you.

- I want to thank our St. Luke's University Health network expert, Dr. Brittany Hilderbrandt, and our other guests, Mayra Castro and Tabitha and Alex Barnes, for being with us today.

And thank you for tuning in.

We look forward to seeing you again soon.

If there's a medical subject you'd like for us to cover, send me a message on social media.

You can find me on Facebook and Instagram.

Plus, you can tune in to hear more of my reporting on 91.3 FM, WLVR News, your local NPR News source, all day, every day.

I'm Genesis Ortega and, from all of us here at Lehigh Valley Public Media, Stay safe, be healthy, and cheers to your health.