Symptoms and impact on people’s lives

Here parents discuss the symptoms that their children experience in relation to leaky ears. They also talk about the impact the condition has on the children’s lives and family life in general.

Leaky ears can impact on children’s personal hygiene and hobbies as well as their health. For some it can mean time off school or time off work for the parents, when they need to look after their poorly child.

Symptoms associated with leaky ears

In addition to fluid leaking out of the ears, people describe symptoms including pain, difficulty sleeping, itching, fever, vomiting and hearing loss.

D’s son has experienced pain and a fever along with the leaky ears.

D: So, L’s everyday life. It’s the pain that comes with it, an ear infection. How unwell it makes him feel. So, L has symptoms of, obviously, pain in his ear, he then also has symptoms of high temperature, um, it’s effected his eating and drinking and also, you know, just being generally unwell and unhappy, especially in the earlier days when he couldn’t tell me what was wrong. You know, you have to go off things like him pulling at his ears. Obviously, as he’s got older, if he gets earache, he now automatically assumes he’s got an ear infection. And he’ll come to me and say, “mummy I’ve got an ear infection”. But he now has had them so regular that he now knows what pain, well, to be honest, L now has a 40% perforated ear drum because of it. So now, if he gets an ear infection in that side, he doesn’t necessarily get pain because there’s nothing, there’s no fluid build-up behind the ear drum.

Interviewer: Yeah, I’ve got you.

D: There’s no pain, the ear drums already perforated, so there’s nothing there, no pressure there to be had. So, obviously, he’s had high temperature, you know, there has been occasions where he has actually been vomiting because of it.

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It’s difficult for C to see her son in pain

C: It’s disturbing for him, especially when it’s leaking because obviously it must be hurting, so he won’t let me clean it or wipe it or anything. And it doesn’t look very nice when it’s dripping out of his ear.

Interviewer: So, has it stopped you from doing things that you would usually do. Well, I know he’s had since 12 months, but does it stop you doing things when he’s got a leaky ear that you would usually do.

C: Mainly not going out.

Interviewer: Sure.

C: Cause I don’t want him to get cold in his ear or anything.

Interviewer: So, has it had any impact on other things like school, sport or social activities or your mental wellbeing.

C: No.

Interviewer: Okay. So, can I ask you which aspect of the leaky ears do you think has affected you the most.

C: Maybe just seeing him in pain.

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G’s daughter is only 7 months so can’t say what the problems are, but her ears seem to hurt, there’s a lot of fluid, and her sleep is poor.

G: I mean she’s too small to tell you that it’s hurting her or anything like that as well. So you’re questioning, oh, she didn’t sleep through the night last night are her ears hurting.
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Yeah, I mean, I suppose the visual of it is up there. When it first happened I was like, what on earth is this. Because she is so young I can’t really say her is it hurting you, is this the reason you can’t sleep. Is this the reason why appetites not up you know so they’re really not questions that we can answer.
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I mean yeah I suppose difficulty sleeping and pain. When I touch her ears, especially behind her ears she cries. Yeah, if she knocks her ears, she often cries.

Interviewer: So, you’ve got the fluid, the difficulty sleeping, and then the pain, and then there’s crying as well.

G: Yeah, yeah.

Interviewer: OK and so smelly fluid, fever, reduced hearing or appetite, none of those.

G: None of those.

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J‘s daughter is going to have surgery for hearing loss

So, we’ve been under ENT for however long that is and they’re just trying to put off operating it. But during the time, obviously, because of COVID, her hearing loss has got worse. So, at first her hearing was fine but now she’s got moderate hearing loss, but they can’t give her a hearing aid because it is leaking and because it’s plastic because it’ll cause more bacteria because of the plastic. Then, because of the leak and the infection they can’t give you a hearing aid anyway. So, luckily enough, he’s said that she needs her operation between ten and twelve, he’s managed to put through now because nothing’s working anymore.

Interviewer: Right, okay, so you’re gonna go through for an operation.

J: Well, he put us through for the operation in January, he said a couple of months, and we finally, at the end of the month, she’s having her operation.

Interviewer: At the end of November.

J: Two weeks she’s got her operation.

Interviewer: Okay.

J: But he sent her for one of them scans, you know, where it checks it all, cause he kept thinking she had an infection in her mastoid. But it wasn’t, he realised that two of her bones were dislocated. So, he said he thinks that’s from birth, but when you research it, it can happen from excessive ear infections and that’s what affects the hearing loss. So, the other doctor was saying that she was quite surprised that C hearing loss wasn’t as bad as it was because of them. But C is autistic so she’s super sensory anyway so, in a way, her being autistic is a bit of a help because they’re sensitive to hearing.

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Impact of leaky ears on people’s lives

As well as discomfort, leaky ears can impact on children’s personal hygiene and hobbies as well as their health. For some it can mean time off school or time off work for the parents, when they need to look after their poorly child.

D says her son’s bouts of leaky ear have an emotional impact and have meant time off work and school.

You know, and me, as a parent, um, you don’t want to see your child unwell, nobody wants to see their child unwell. And when it’s happening on a regular basis, that makes you feel a little bit down as well. Obviously, with the time, well for him, particularly for him in recent years, taking time off school so effecting his schoolwork. Me, taking time of work to care for him, like me or his father, one of us having to take time off work to care for him.

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G talks about the impact that her baby daughter’s leaky ears have on family life.

G: Obviously it’s a worry as a parent, a parent of a baby so young, and because no one seems to know what it is, I’m absolutely petrified about the long-term effects it could cause because no one knows what it is. Um. You know, she’s had so many antibiotics, so many drops like. For a baby this young, she shouldn’t have been having this many. Things like swimming, bath, hair wash, everything like that is impacted. You know, we’re due to go on holiday in a few weeks’ time and I’m like, are we gonna be able to go on holiday because of your ears. Because I don’t know if the pressure is gonna be affected in any way. So, we’ve actually booked him for a pressure test just before we go, because I can’t take her on a plane if it’s gonna.

Interviewer: Can I ask which aspect about the leaky years affected you the most?

G: I think it is the unknown. Like the unknown of we don’t know what this is. That is what is, you know, people will say, have said to me every month like parents, grandparents, how are her ears today and I’m like, you know what I’ve decided, until we get dressed, I’m not thinking about it. I need some sort of normality with her, I can’t just.

Interviewer: Constantly have it on your mind, questioning when you wait, you need to find out the answer.

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J says the liquid from C’s ears causes problems when it gets into her hair. She can’t go swimming anymore.

J: It stops her having to do her favourite things like swimming, that’s a favourite. She can’t do [unclear 03:03] she says she gets embarrassed now she’s a bit older cause it smells. It bleeds because it gets so itchy because it’s constantly wet, so she’s awake at night scratching her ear. I don’t know whether that affects her hearing but something affects her hearing so that’s not helped, I think it’s the continuous ear infections, so she’s now got moderate hearing loss. Anything else that affects it 010c?

C: It’s when people say it smells.

J: Yeah, just when they say it smells. It gets in your hair doesn’t it, makes your hair sore to brush.

Interviewer: Thank you. So, kind of the things that you’ve talked about there, what aspect of the leaky ears do you think has affected you the most.

J: What’s the most, is it the smell or the fact that you can’t do things cause of the leaky ear?

C: the fact that I can’t do anything.

J: Yeah, I think it’s that. Things like washing her hair cause of the ear leaking because of the infection, it can’t be wet.

Interviewer: Of course.

J: And it ruins stuff doesn’t it, cause it drips on them.

C: Like if I went swimming right now, it would leak in the swimming pool.

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