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Robby’s glue ear

Photo: Read Robby's story

Kiersten and Howard have travelled a rocky road with their six-year-old son Robby’s glue ear causing fluctuating hearing levels, but they may have found a solution in the form of hearing aids.

Football fan Robby was three years old when parents Kiersten and Howard began to suspect there might be something wrong with his hearing. “He was a quiet baby and slow to talk,” says Kiersten. “But we put it down to the fact that Jinnie, his older sister, spoke for him and didn’t give him the opportunity. Then after a while we thought ‘there’s something more to this’.”

Over the next two years, Robby’s hearing was monitored at a local clinic. It was fairly good in the summer, but dropped off a lot by the winter, indicating that he had glue ear.

Glue ear occurs when fluid builds up in the middle ear, making it harder for sound to travel from the outer ear to the inner ear.

“I wasn’t terribly surprised by it as both Howard and I had glue ear as children, but we both had operations for adenoids and then there were no more problems,” says Kiersten.

Robby was put forward for grommets – plastic tubes which help to stop fluid building up behind the eardrum - and, after a wait of several months, had them inserted in August 2012.

They worked really well and lasted for sixteen months, during which time he made a good start at school, although struggled with literacy. “There were some signs of delay prior to the grommets coming out. It’s possible he’s dyslexic, like Jinnie is, but we won’t know until much later because of his hearing loss. His glue ear could also be at the route of the delay,” says Kiersten.

One grommet fell out just before Christmas 2013, with the other still lodged half-way out. “I noticed a drop in his hearing almost immediately,” Kiersten says. “That’s where it all started going wrong for him really.”

Kiersten rang ENT in mid-January, but it was mid-March before Robby could have an appointment. In those two months, Kiersten and Howard saw their lively and energetic little boy become more and more distressed.

“He didn’t want to go to school at all. He’d be in tears, upset and withdrawn. He would just cling to me, and have to be prised off. That’s no way to start the day,” Kiersten says.

“He was saving up all his frustration and upset for when he was at home.”

It also affected him socially. “He has a low threshold for frustration, so if someone can’t understand what he says the first time, he can get frustrated and refuse to speak anymore rather than try to find a different way of saying it,” explains Kiersten.

Robby stopped going out to play with friends locally and just wanted to watch TV or play by himself, and his behaviour at home was particularly difficult. “While he was in school he was quiet in class and a bit withdrawn as he wasn’t hearing; but he was saving up all his frustration and upset for when he was at home. It really had a big impact on him.”

Robby also started getting ear infections, resulting in three courses of antibiotics. As his school would only give him one dose per day, it put Kiersten in the stressful position of having to drive a thirty mile round trip each lunchtime to ensure Robby got all his medicine.

“It wasn’t compatible with working parenthood and that was a real palaver,” Kiersten says. “He was getting very upset with the infections and he couldn’t go swimming. There were all these problems when he was in school and with him being off school. Either was difficult.”

Kiersten also wasn’t sure whether the pain Robby was experiencing was an infection or just a sign that the fluid in his ears was moving. So when ENT said Robby’s hearing had dropped right off in both ears but it would be a long wait for another set of grommets, Kiersten was worried about his ability to cope.

“He was so distressed; I thought he just can’t continue going to school for another eight or nine months in this state,” she says. She rang our Freephone Helpline and was put in touch with Jamie, their local family officer.

“...we could consider hearing aids rather than another grommets operation.”

“I had a chat with their audiologist as well. She was really helpful and said we could consider hearing aids rather than another grommets operation. ENT hadn’t explained that to me, they just assumed that we would go down the grommets route again,” she says.

But Robby’s audiology department warned that if his hearing got better then they wouldn’t supply hearing aids, which made Kiersten uneasy. “Knowing that glue ear fluctuates and that it takes three months to get an appointment, I was concerned that if his hearing got better the week before the appointment then he wouldn’t get them. Then if his hearing dropped off again it would be another three months without hearing aids which is another three months of school he’d miss.”

Fortunately, Robby soon got his first hearing aid and it made a massive difference. “He was relieved to be able to hear everything that was going on. He wore it to school and that was that – he was absolutely fine with it,” says Kiersten. “We’re still having the odd off day because of his social and literacy issues but actually in himself he’s much, much brighter and he’s communicating more because he can hear.”

“He’s much, much brighter and he’s communicating more because he can hear.”

It made such a difference that it prompted Kiersten and Howard to make a decision. Initially they had asked for hearing aids in the interim while waiting for the grommets operation, but, as the hearing aid was working so well and Robby might grow out of the glue ear in the next couple of years, they weren’t keen on him having another invasive operation; so they decided as a family that they’d stick with the hearing aids long term.

But some confusion followed about whether Robby could have a second hearing aid. As Robby’s hearing loss is roughly the same in both ears, two aids were originally discussed, but Kiersten was told audiology only ever provided one. With Jamie’s support they eventually agreed they would provide a second hearing aid once Robby was used to the first.

Things have slowly got better at school. Robby was on a literacy programme because he wasn’t progressing with his reading and writing. But it wasn’t until Kiersten was able to explain that his hearing has definitely dropped off and that he was eligible for a second grommets operation that the school began to understand.

“His teacher actually said to me ‘Oh, so it’s not selective then!’” says Kiersten. “But from that point onwards he was coming home telling me that he wasn’t getting told off so much, people were being nicer to him and he was a bit happier to go to school because people understood that he wasn’t just being rude.

“He took to them like a duck to water.”

Once he got the hearing aid, a visible thing people could see, things improved even more. The school began to take an interest in the support that is available to Robby.” “I’m hoping he’ll grow out of it soon and that he’ll then be able to catch up with his school work and his socialising and have a completely normal hearing life,” shares Kiersten.

“But if he doesn’t then I don’t feel it would be an insurmountable issue for him now. If you’d asked me that four months ago my answer would probably have been a bit different. The problems with school and him being so distressed were quite upsetting and I wouldn’t want him to go through all that again. But I think he feels differently about that now and it’s the hearing aids that have made that difference. He took to them like a duck to water.”

However, Robby wasn’t given his second hearing aid for his left ear, as when they went to collect it they were told his hearing levels no longer indicated that he needed aids, despite the fact he feels his hearing is now worse in his left ear. The audiologist did say his hearing levels were likely to drop again in the next few months though, and then he might need aids again. And so the journey continues…