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Growing up with glue ear

Photo: Sonny's story

With neither grommets nor hearing aids proving to be the solution Sonny (12) needs to manage his glue ear, his family has explored other options to support his hearing in secondary school.

When Sonny (then 9) attended his six-monthly audiology check, he and mum Lindsay were used to the result showing no improvement in his hearing.

Sonny’s moderate hearing loss caused by glue ear – a build-up of fluid in the middle ear – had fluctuated for years. He was diagnosed with the condition, the result of repeated ear infections, aged three, but now, finally, a significant improvement was recorded.

“I’m sure it was due to spending so much time outdoors,” Lindsay explains. “During the summer that year, we spent three-and-a-half weeks in the Lake District. We were in the fresh air all day and camped overnight. It was very shortly after that we saw a big improvement in his hearing.”

For the first time, Sonny’s hearing loss in both ears had changed from moderate to mild. The improvement, though, was short-lived. As winter followed, so did coughs and colds leading to more congestion and ear infections. A deterioration in his hearing soon came about.

“Winter always makes Sonny’s glue ear worse,” says Lindsay. “We know it happens, so we look out for signs that he might be struggling, like being especially tired after school if he’s trying harder to hear everything.”

Over the years, Sonny has worn hearing aids and tried grommets – tiny tubes fitted into the ear drum to allow air to pass through into the middle ear. Neither has ever been a perfect solution.

“Sonny first had grommets fitted aged five, and they made a difference immediately,” Lindsay recalls. “We were overjoyed when he told us that he could hear the birds tweeting and people’s footsteps as they walked – everyday sounds that, back then, we didn’t realise he’d been missing.”

The family felt hopeful that this was the start of a new chapter for Sonny. Within weeks, however, the grommets fell out. “It was heartbreaking,” Lindsay says. “We knew that grommets wouldn’t be a long-term solution, but it was disappointing that they fell out so soon. We’d come a long way since getting his hearing loss diagnosed, but that felt like we were back at the start.”

Knowing that some natural improvement over time was possible as Sonny grew, the family opted for hearing aids over another immediate grommet operation. And, while wearing hearing aids meant he also got access to support such as a Teacher of the Deaf (ToD) and the use of a soundfield system in the classroom, they brought challenges too. “The hearing aids made every scratch and movement much louder. Sometimes it was hard to make out the things I actually wanted to hear,” Sonny explains.

Through perseverance, Sonny adapted to the hearing aids. But while they helped him hear, they weren’t helping to improve the glue ear. Grommet operations, on the other hand, cleared much of the congestion but, both times Sonny had them fitted, they fell out within weeks.

After months of waiting, at Easter this year Sonny had an operation on one ear to repair his ear drum. The procedure is designed to improve his hearing and stop his middle ear from becoming infected.

While Sonny was used to operations, having had two previously to fit grommets, this was different. It would take up to three hours, with Sonny’s whole head bandaged afterwards. “I felt nervous beforehand,” says Sonny. “It was a big operation, and I wasn’t sure if it would work because the grommets never did.”

The pandemic meant only one parent could be in hospital with Sonny, making it an even more anxious time for the family. “It was very hard,” Lindsay explains. “But Sonny’s hearing has been recorded as within the normal range at each of his check-ups since, so it does seem to have made a difference.”

Ongoing support for Sonny is now a big concern for the family. “Sonny’s hearing has levelled at his last few audiology appointments,” says Lindsay. “On the one hand that’s great, but I worry that he may lose the support such as the ToD, which he still relies on. It’s a fluctuating condition, so I hope the support remains in place for him through secondary school.”

Getting the right support for Sonny is something the family has worked towards for many years, opting for a private assessment of his learning needs to help with an application for an Education, Health and Care (EHC) plan before he started secondary school.

“Sonny’s primary school was really supportive but we knew that secondary school would be a very different environment,” says Lindsay. “We received a grant to support with the cost of the assessment and I’m so glad we did it. We found out that Sonny is dyslexic, so it has given us a more complete picture of his needs. Hearing loss is just part of it.”

While he’s been through a lot, Sonny’s always remained positive. “People often say to us, ‘Sonny by name, sunny by nature’,” says Lindsay. “And he really is. He’s just joined the Air Cadets, he’s learning how to play the guitar – he isn’t letting everything he’s been through hold him back.”