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Little ears, big challenges: navigating mild and unilateral deafness in children
Introduction
Amanda Hall
Hello, I'm Doctor Amanda Hall and I'm a paediatric audiologist and researcher at Aston University in Birmingham.
Hannah Cooper
Hello, I'm Doctor Hannah Cooper and I'm a paediatric audiologist and researcher at the UCL Ear Institute in London. Welcome to Little ears, big challenges: navigating mild and unilateral deafness in children, our podcast series, made together with parents to help you navigate the world of mild and unilateral deafness for your young child.
Mild deafness means that a person is unable to hear quieter sounds, and unilateral deafness means that a person has a hearing loss in just one ear.
Amanda Hall
It can be hard to make decisions for young children with mild and unilateral deafness, as there isn't a lot of information available about what helps and what doesn't. In Little Ears Big Challenges you will hear parents discuss their experiences of their child's mild or unilateral deafness, how they make decisions, and what the future holds. In the final podcast, we talk to older children and adults about their experiences of growing up with mild or unilateral deafness.
Hannah Cooper
The questions we ask in this series come from research we carried out to explore parents’ experiences of having a young child aged 0 to 4 years, with mild or unilateral deafness. Parents who took part in the research told us that they would have liked to hear the experiences of others in similar situations to help them navigate uncertainty, and these podcasts are primarily designed for parents of children newly diagnosed with mild or unilateral deafness. Let's meet the parents.
Clodagh
My name is Clodagh and I have a two and a half year old daughter called Bethany. She goes to nursery two and a half days a week. And, she loves singing, dancing, ice cream animals. You know, she's a typical girl's girl.
Joe
I'm Joe, George's father.
Louise
And I'm Louise. I’m George's mam.
Joe
And, George is our two year old little boy. He's full of life. One of the most active children I've ever seen. He loves running around.
Louise
Riding his bike.
Joe
Riding his little trike. He's done miles around London and locally at home. Anything to do with Toy Story, he's obsessed with and acts out all the scenes. And he loves his music and doing a bit dancing.
Louise
Yeah. He's always loved his music, hasn’t he?
Joe
And strangely, Irish broom dancers off YouTube.
Kim
My name is Kim. My daughter's name is Ela. She's two years old. She goes to nursery four days a week, and she absolutely loves it. She loves eating a lot. Food is probably her biggest motivator. And she's very, very active. She's got a bit of second child energy, I think, going on there, that she's my first and my only currently.
Waqas
My name is Waqas, married to Sana. We have been in the UK for five years now. My daughter Zoya is two years old. She loves going to the to the park. She loves now asking questions. Why? And then she's now a bit more, vocal, about what she likes. What she... her likes and not likes.
Abby
My name is Abby and I'm here to talk about the experiences we went through with our daughter, Betsy. She's just turned five. She's a typical five year old girl. She's obsessed with anything that you would think girls would like. So she loves Disney. She loves princesses. She's recently just got very much into nail varnish and things like that. She loves school. She absolutely loves school. Loves going there with her big brother. She does gymnastics classes outside of school, and she goes to football as well. So, yeah, she loves she loves everything really. I think copies what her big brother does. Looks after her little brother. Yeah. She's amazing.
Amanda Hall
In our research, parents also told us that they would love to hear from older children and adults with mild or unilateral deafness to find out more about their experiences. So let's meet Sophie, Mia, Rachel and Jonathan who we’ll hear more from in episode five.
Sophie
Hi my name is Sophie. I'm 11. I like badminton, piano, reading, playing with friends, and tennis, and singing.
Mia
Hello, my name is Mia, I'm 13 and I enjoy sailing. I have two younger sisters. I also really enjoy books, cooking, baking, netball, music.
Rachel
My name is Rachel. I'm a paediatric audiologist. Outside of work I do a lot of exercise and things I'm trying to lose a bit of weight at the moment, so exercise is at the moment in my life. So I do some gig rowing. So a gig boat is a 32 foot long wooden boat. It has six rowers, one oar each rower, and you have a cox at the front who shouts at you constantly for an hour.
Jonathan
My name's Jonathan Gale. I'm a professor of auditory cell biology at University College London, at the UCL Ear Institute. Interests outside, I referee rugby, my kids, I coach them for rugby for, you know, from when there was age seven up until just recently. And, yeah, and I like get involved in lots of other things, including scuba diving.
What does mild/unilateral deafness mean?
Hannah Cooper
So let's start with hearing from Clodagh, Joe, Louise, Kim, Abby, and Waqas about how they found out about their child's mild or unilateral deafness.
Clodagh
I count ourselves as quite lucky. We were on the radar from day one because she didn't pass her newborn hearing screening test in the hospital. We hadn't quite been discharged yet. And they carried it out in the hospital. And her left ear didn't pass, whereas her right ear did. So we were asked to come back. Yes. And had all of the prodding and probing happened to her and yeah, ultimately diagnosed with a moderate unilateral loss in her left ear.
Louise
It was the day after he was born. He had the newborn hearing test. And his left ear passed, but his right ear failed. So that it was just explained to me that it's probably just fluid. It might just need time.
Joe
Yeah, it's quite common.
Louise
Naturally drain out. But they said you do need to have a repeat test in about a week's time. So we took him back to the hospital and just got the same results again. But then they did another test. I think that was an ABR I think.
Joe
Yeah, the ABR test.
Louise
Automated ABR test. And still we were getting the same results, he was passing straight away on the left side, but the right side was still failing. Again they just mentioned it might there might be fluid.
Joe
Yeah. Give it give it a couple of more weeks.
Louise
Give it more time. But they said because I think their protocol is then to refer to audiology after a second failed test. And then two weeks later Joe we had the audiology testing.
Joe
Yeah. So that was the first referral.
Louise
Yeah. That was the first referral. Yeah and I think me and Joe we knew there was something wrong cos because the audiologist didn't seem to spend that much time on the left side, and he moved on to the right, and it just seemed, the test went on for ages. And I think it did, didn't it?
Joe
Yeah, there was lots of repeat testing. And, you know, I think when you see people doing things over and over again, it kind of just creates that bit of concern and worry and overthinking. And, you know, the professionals don't want to say something straight away until they're 100% sure. So, you know, you can appreciate why they do it.
Kim
We had the newborn screening after Ela was born and there showed some concerns with that testing. Initially, they said that it was to do with perhaps having mucus in her ear. So they came back the next day as I was supposed to stay in hospital for a bit longer. And when they retested, they said that it couldn't be the mucus in her ear. It was to do with something else, and that we would be referred for further testing in the audiology department locally. When we then had our first audiology appointments, that's when we discovered that she had unilateral deafness in her left ear. And that was about a week after she was born.
Abby
So she's got unilateral hearing loss which she was born with. And we found out about it when she had her hearing check-up she was about five, six weeks old. So she didn't get it done straight away because she was premature. She was up on the special care baby unit for about a month or so. So that kind of delayed her having her hearing check. And then when she did have a hearing check, it came up that there was kind of nothing. Nothing going through on her left ear. So then we just had follow ups with audiology and then yeah, it was it was confirmed there that she's got the profound hearing loss.
Waqas
On the second day of her birth the nurse technician came and she had this device, and she explained what she was going to do. And then she started looking at the at the device. Me and my wife didn't really pay much attention to it. And then after 5 minutes or 5 or 10 minutes, the technician mentioned that there's no visible response and we're going to do the test again next day. But we were due for discharge the next day, so we didn't get to it. So they gave us another appointment, I think a week or week and a half afterwards. The explanation that they gave at the time of discharge was that because it's a C-section delivery, and since the baby didn't go through the birth canal, so there's a the fluid didn't really come out through the orifices. So there would be some, some fluid build-up in the, in the ear canal.
It didn't really think much about it because one thing which is really great about the NHS is soon as finding out that that that Sana was was expecting there've been regular interventions. So it was just like another appointment getting slotted in for us. So we went and we took Zoya after seven, nine days to the appointment. And during that time, we didn't notice anything in terms of we didn't have any concerns. I distinctly remember there was a pan that got dropped in the ward, and that really startled Zoya on the first day of her birth. So, I mean, it was just another test in our mind.
So this time it was a different technician that was there. We were invited into the room and the test lasted for about 20 to 30 minutes. And that was the first concern that I had, because the family that went before us, that only lasted for like five, seven minutes, right. So when this was happening for 30 minutes, so that was the first concern. And then she said that there's still no response. And then we have to refer you to the audiologist. So that was tough. I got back home, we had a discussion. It was very difficult for me. My wife is a medical doctor herself so she kind of knew what was happening. And then we waited, basically. And then that was about, I think, over the last two and a half years, that wait of two weeks for us to see that the audiologist was the was the most difficult wait, at least for me.
So then we went and we saw the audiologist. It was one of those soundproof rooms that you see where these fancy music producers work. Right. So and it lasted for 4 hours, right, 4 or 5 hours. And we were given strict instructions by the, by the audiologist to not make any noise. So the only thing, the only visual reference that I had was the expressions of the audiologist. And then in the end she said that she has mild to moderate hearing loss.
Another thing that happened during the day that was of a bit of a comfort for us was the audiologist herself was wearing hearing aids in both the ears. So that was like, okay, so this is an audiologist. She herself has hearing impairment and she's doing what seems to be a very technical job. Right. Which requires a lot of, a lot of education, professional education. And then on the job training before you get to a senior audiologist space. So one, so the question after the entire thing, she said that, that, that the test today has only for the right year, we're going to give you another appointment for the left ear. And then I said that will she lead a normal life. That was the question that I had. And she said that, just look at me. I'm doing this job and I'm wearing hearing aids. I have more or less the same hearing impediment that Zoya, we have currently diagnosed today. So with the right interventions, there's no doubt that there are going to be any challenges, more or less, over and above the challenges that her hearing peers are going to are going to face. So that was really I mean, that coming from a person who has hearing impediment herself was very reassuring.
And then from so right outside the audiologist clinic, there were a lot of flyers with regards to the NDCS and some, some of the other stuff. So I picked up all the flyers. And then I think from that day onwards our journey started. So we were I think we were brought in again for her right ear a couple of weeks later. And then she said okay, we're going to do some hearing tests for both of you, for both me and Sana my wife. And then they put us on that track in NHS.
Explanation of deafness
Amanda Hall
We asked parents to explain mild or unilateral deafness to us from their point of view. Let's see what they had to say.
Louise
I would say, like, there's various, like, challenges. But I think at first glance, when you look at George, I feel like people were always shocked when we told them he was deaf in one ear. That said they never would have guessed really.
Joe
Kind of from if like people, you know, you would just visit and see friends of friends, you know, in short engagements with George, people really wouldn't notice. You had to spend time with them and see that, you know, if you were on his hard of hearing, his deaf side, he may miss things. And, you know, it's that difficulty, he didn't always have the directional awareness to locate sounds.
Louise
He would often look for sounds, wouldn't he?
Joe
Yeah.
Louise
He would get a bit disorientated.
Joe
He did seem to adapt quite quick and kind of hunt out the sound. So he would be looking around the room.
Louise
And we found as well sometimes like if we were like the shops and things, we’re at a coffee shop and, you know, some people that just coo over babies and they talk to them. There was a man. He was just saying, aren't you lovely? And he was talking to him, and George actually put his left side, which was his hearing side. And he kind of went like that, which was, that was one of the first.
Joe
Yeah. Kids they do adapt.
Louise
They do adapt, I think, you know.
Joe
Yeah.
Hannah Cooper
Do you think it's harder to explain deafness in one ear than deafness in both ears?
Joe
Yes. A hundred percent.
Louise
Definitely. Even when George was diagnosed by the audiologist. I'm not saying it was bad what he did, but I think, you know, no one likes to give bad news. And I think the first thing he said was it'll not affect him. You'll be fine. And if we lived in Wales, well probably wouldn't have even got an audiology test, because I think Wales are still a little bit behind the rest of the UK. I mean, at the time there were I'm not sure if things have changed a bit now.
Joe
I think that's a difficult thing as well because even family, you know, they're just say it in a reassuring way. Well, at least he's got the other side. It's not quite as simple as that. And it, you know, it kind of, you know, they're trying to reassure, but in a way, it also kind of just, you know, you think they're not understanding the kind of gravity of the situation.
Louise
Yeah. And I think one of the things my auntie said, and, you know, she never holds back does she Joe.
Joe
No.
Louise
You know, I was saying, you know she was like oh pet, it could have been so much worse, he could have been deaf in both ears. And I was like, you know, it doesn't really make it any less upsetting, but I think it's just, people don't mean anything bad.
Joe
It's just lack of understanding. And I think that's the scary thing when you're kind of thrown into this world, you know, we really didn't have any awareness. We didn't have any close friends or relatives with deafness and it's, yeah, it's just daunting when you go into it because you think, oh, you know, I'm going to have to learn sign language or what do we need to do for our son for the best? And, you know, and then you find out like, oh, there's so many different versions of sign language and it's you just kind of feel lost at the start.
Louise
Yeah.
Abby
Yeah. So unilateral hearing loss is obviously just one sided. They check both ears, but the different levels. So you can have a mild hearing loss. You can have a severe hearing loss. You could have a profound hearing loss. So essentially with Betsy having a profound hearing loss, she could hear if a plane were to go overhead, do you know what I mean? Very, very close by. Or if a dog, for example, was to bark really loudly in her ear, which we wouldn't want her to be, we wouldn't want that to happen anyway. But so sound like that she would hear some of it. But essentially, yeah. In her left ear in terms of speech sounds and just your everyday sounds that go on that she can access in her right ear, she can't access those sounds in her left ear.
Hannah Cooper
And do you think unilateral deafness is more difficult to explain than deafness in both ears?
Abby
I think so, I think a lot of the time when you say that your daughter or your son is, is deaf, most people would think, yeah, it's both ears and it would be exactly the same. And I think a lot of people would think ‘deaf’ or they can't hear a thing. I don't think a lot of people are aware of the different levels and kind of types of, of, of hearing loss that you can get. So I think, yeah, it's probably harder to explain. And a lot of people with Betsy don't obviously realise anything's, anything's wrong with her. So it's just explaining that and making sure everybody's aware of what they can do to help, when they're in her company really.
Clodagh
So for us, we, when we were in the audiology office, our audiologist who's wonderful and so helpful and, you know, guiding us on this journey, she actually played us a recording of the level of Bethany's hearing that she could hear. So that made it easier for us to describe to other people the type of things that she could hear from her left ear. So we describe it as almost talking to her through a closed door. Because while she isn't profoundly deaf, she, she doesn't have the same level of hearing as we do in in our ears. So that's how we describe it to other people. We close the door and talk to them through the door to explain it.
I think it's more difficult for people to understand because she does have perfect hearing in her right ear. And she went so long without wearing a hearing aid because she just refused to wear it. So other people can't quite grasp, especially still at this young age, that she can't hear as well as other people and that she might need things repeating and that, you know, yes, on lots of occasions she is being a typical two year old and ignoring us. But actually on some occasions it is because she's struggling to hear and doesn't realise that we are aiming instructions or conversation towards her. So yeah, I think that that is the, the, the tough side of things, just where she isn't profoundly deaf and it's more difficult for people to, to grasp.
Hannah Cooper
And do you think that people notice that Bethany is deaf?
Clodagh
Yeah. No. Unless she has a hearing aid in people just don't notice. They, if she is ignoring them, people will put it down to her being a typical two and a half year old. And like I said, on occasion, she is ignoring people. But no. Otherwise, unless she's walking around with her very beautiful hearing aid, she, people don't notice that she's deaf.
Kim
I think that initially most people wouldn't necessarily recognise that Ela has deafness in one ear. She does wear a hearing aid in that ear now, so people might notice that she's got the hearing aid, but they don't particularly notice it, even though it's kind of pink with stars and glitter. But if she didn't have her hearing aid in, I think that she generally reacts as if she is hearing, she has hearing in both ears. Until you have to explain something to her for a long time, so it takes her a longer, processing time. And also she might not initially respond if you call her. If she does what she does, if she does, then she will turn to the side where her good ear is. So even if she has to turn all the way around, she'll use her good ear to kind of figure out where the sound is coming from. But most people wouldn't necessarily notice. I think now that she's older, it's a little bit more challenging for her because her deafness has actually got worse in her left ear since her initial diagnosis. So now it takes her much longer to respond.
Waqas
The only challenge that I faced was explaining it to people who were in our family circle or who are colleagues at work, for example. The thing we usually hear is, but Zoya is hearing properly, she can listen to and responding to whatever they are saying, right? So now we have basically mastered the art of responding to that. So I basically tell her that I tell everyone is like she doesn't hear “sh” “th” right. So I actually proactively make these sounds. And then I tell them that without these sounds in a, in a for an English sentence, a sentence in an English language, you can't really understand where the sentence is beginning and the sentence is ending. And then what that ends up happening is that brain has to work overtime, and then brain, when it's working overtime, means that the fatigue, the mental fatigue is very high and then the children or adults get tired easily.
Impact of deafness on everyday life
Hannah Cooper
Next we asked parents to tell us about the impact of their child's mild or unilateral deafness on everyday life. Some of the parents mention a device called a BAHA, which is a bone conduction hearing aid often worn on a soft band. Let's hear from them again.
Abby
Well, I mean, she like I said, she kind of just gets on with it. She always has done. It's something that we've always spoken about. We'd never shy away from it. Very open all her you know, her brothers are aware of it. Her big brother especially will kind of explain it to people as well if he's with them. And children, children are children and they're quite inquisitive and they'll often ask things and which is great. And we would welcome that. She you'd only really know about it with Betsy. She wears a specific type of hearing aid, and she just wears a headband with it. And that's really the only way that people would be aware of it. So sometimes it's tricky. It's kind of more for classes or if you're going out soft plays in particular, certain places with a lot of background noise, it can be a little bit tricky to kind of navigate. We spoke earlier about her going to a gymnastics class. We've actually opted not to use any hearing aids there just because we don't actually think it was helping. And I think having the hearing aid on and she uses radio aids and all sorts, it was probably more detrimental. But in her football classes, it's very beneficial. So we've what we've realised is we just have to take every, each environment as it comes and every activity she does and just kind of decide what's going to work best for her and the coaches and teachers and things like that.
Clodagh
The impact at home is not major. And that's because she is an only child in the house. So it is just me, her dad, Bethany, and our dog. So the impact in the house, she doesn't actually often wear her hearing aid at home. The impact when we're out and about, you know, at busy areas, you know, arcades, for example, at the seaside, things like that. She'll sometimes get stressed, because it is noisy with her hearing aid in and she will choose to take it out and that they are decisions we completely leave up to her. If she turns around and says ‘noisy’ and tries to take it out, we don't stop her because clearly she's uncomfortable and that's the last thing we want her to be.
Nursery. Her behaviour can sometimes be more challenging because she gets frustrated with other children, particularly, you know, if they come up behind her, on her, on her left side. They try to take something from her that she's playing with, and she can't, she doesn't always understand the instructions. You know ‘share, it’s so-and-so's turn’, things like that. Because it is such a, it's a much louder environment at nursery. So her behaviour can be more challenging in that environment. We do find she is better behaved when she has her hearing aid in, and I think that is just because, you know, she is understanding instructions that bit clearer. And she can communicate herself better. You know, she can grasp what she's saying that that little bit more easy. So yeah, they are the main differences we notice, and other people notice as well.
Kim
I would say that it hasn’t impacted us too much. She's a very eager child. She loves to learn, and she's very acutely aware of, I think, her other senses. But it does impact her in the sense that she has a little bit of a longer processing time. And it, she might take a while to respond from afar, or she turns, using her good ear to kind of figure out where the sound is coming from. But I think she does rely on her hearing aid quite a bit now. She recognises that it helps her to understand what's going on. And she I think she's started lip reading or she's trying to. And she recognises some simple BSL. So she will kind of look at my hands or her dad's hands to kind of help her. But generally, I don't think it's impacted us very much. If anything, in some ways it's positive because it's given us a greater understanding of the world.
I just think that now that we have more of an understanding of deafness, it’s opened our eyes to BSL, and we think it's a really good way of helping us to communicate not just with her, but with each other as well. And, especially as in my in our household, we speak three languages. I speak Vietnamese, my husband speaks Welsh, and we speak English together. So, signing has really helped us to kind of make sure that we all just about understand what's going on if we're speaking each other's home languages. And I think it's really helped us to recognise that more needs to be accessible for children and people with deafness. So I think that's why it's opened our eyes to it. Otherwise we would have just ignorantly been getting on with our hearing worlds without really understanding the challenges that some people have.
Louise
I found like when, he started nursery when he was one, and at that point he did have the BAHA, didn't he?
Joe
Yeah. Yeah.
Louise
And would deliberately put him in nursery on a Monday because that was typically that quieter day. And they noticed a massive difference because, they obviously looked after him before he used the BAHA and basically he wasn't aided for nearly a year. And the deaf teacher hadn't done any education at this point with the nursery. So he didn't wear his BAHA for a few weeks. So the nursery looked after him both with and without the BAHA. And they said with the BAHA they did notice a massive difference, they said they didn't need to raise their voice to him as much. And they also mentioned when he was outside in the garden, he was just sitting down and I think there was loads of birds chirping and cheeping. And they said he just looked really happy and he was like looking around and said he just looked like he was really enjoying hearing a little bit more.
Joe
Yeah.
Louise
But I think that was like a lot of negatives as well with the BAHA because we found in noisy, noisy environments it didn't really make much of a difference. If not, the BAHA seemed to make things worse. You would get like quite overwhelmed and would sometimes have to take them to a quieter part. Like the play group or if we were in a soft play. But then as soon as we took, it was like a lose situation, then we took the aid off, he was happier, but then we realised he couldn't hear as well as he did. And I think that's why, that's why we, when we're seeing you know the negative aspects of the BAHA, we felt more we wanted to pursue a cochlear implant, basically for the deaf side. And we spoke to because it was through joining a Facebook support group that we found out that it's a standard practice in a lot of countries, especially America.
Joe
I think the, the, the thing that you've got to learn is the limitations of each type of aid. Yeah, that, you know, from even a BAHA to hearing aid and understanding those limitations because even then, you know, you're dealing with family or you just think, oh, he's got that he can hear now and it's, it's really not the case. You know, it's a learning curve for your child to learn and adapt to those aids. And then for the adults and, you know, the, the care teams to kind of monitor that and see how they're responding.
Amanda Hall
Thanks so much to Abby, Clodagh, Kim, Joe, Louise and Waqas for sharing their experiences and thoughts with us.
Hannah Cooper
In the next episode, they'll be talking about their decision making processes around technologies and other management for their child. So do join us for episode two, wait and see or maximise hearing, from Little ears, big challenges: navigating mild and unilateral deafness, here on UCL Minds.