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Paul’s cholesteatoma

Photo: Paul's story

Cholesteatoma and an immune disorder mean standard hearing technology isn’t an option for 11-year-old Paul. So parents Hannah and Steven had to find a solution to help their son hear.

“I wish I’d known that ear infections could cause so much damage,” sighs mum Hannah. “But they damaged Paul’s eardrum so much that a cholesteatoma (a collection of abnormal cells inside the ear) formed. The infections, which Paul started getting from 18 months, caused him to noticeably lose his hearing by age three.

“He didn’t have a hearing test until he started school, and by that time he was 40% down on both sides. Paul’s now moderately deaf and uses speech and Sign Supported English to communicate.”

“I wish I’d known that ear infections could cause so much damage.”

Because of the cholesteatoma, Paul had surgery in 2012 to remove infection from the mastoid bone (part of the skull bone that can be felt behind the ear) and diseased ossicles (small bones in the middle ear).

“The ear infections continued and got into the remaining ‘mastoid cavity’, leaving it constantly wet and diseased,” Hannah continues. “The cholesteatoma means Paul can’t wear hearing aids with an earmould as they’d block the ear canal, moisture would build up, and this would cause more infection.

“Paul has an immune condition meaning he can’t fight infection of the ears, nose and throat. Because of this, he can’t have a bone anchored hearing aid either - if the screw at the implant site (abutment) became infected he wouldn’t be able to fight the infection.”

Unable to wear conventional hearing aids, Paul was fitted with a bone conduction hearing aid on an alice band, which he hated. “It was really uncomfortable and pressed against my head,” Paul remembers. “There were a few mean people in school who laughed at me, so I didn’t really like it.”

However, things got really difficult when the bone conduction hearing aid broke, leaving Paul without any hearing technology. “That time was frustrating for Paul, especially at school,” explains Hannah. “He’d come home very upset, feeling isolated.”

Hannah and Steven have mixed feelings about the support they received during this difficult time. “Deaf Connect – our local deaf charity, the National Deaf Children’s Society, and our hearing impaired service have been fantastic. Parents who don’t have deaf children don’t always get it, and you have to accept that. But there are lots of helpful and positive people out there.”

"School didn't really understand the problem."

“School didn’t really understand the problem,” continues Hannah. “Some of them have had deaf awareness training but they don’t use it on a daily basis. When we were struggling with the lack of support from school, the National Deaf Children’s Society provided information. As a teacher myself, I knew about Teachers of the Deaf (ToD) and it was me who referred Paul for one. I wonder what would’ve happened if I hadn’t known!”

“The ToD was very helpful,” says Steven. “Once she got involved, everything improved. I think she got school to understand what was going on. And she also helped us get a statement.”

Meanwhile, Hannah and Steven knew something had to be done about Paul’s lack of hearing technology. “Mum and dad were getting desperate,” says Paul, “and then they found a website for jogging headphones.”

Steven explains further. “We were looking on the internet and we came across Aftershokz headphones. We thought, we’ll try them and see. And they’re brilliant!”

Aftershokz headphones are mainly marketed for hearing athletes to listen to music while running. But as they work by bone conduction, Paul is able to use them in conjunction with a listener or Bluetooth set to hear his teacher at school, the TV, iPad, and mobile phone conversations.

“The headphones are really good, and I think they’ll make secondary school easier,” says Paul. “My friends think they’re cool but a few others didn’t like them.”

“A few people made comments,” continues Hannah, “but it doesn’t bother him.”

“We want life to be as normal as it can.”

It’s not a permanent solution and Hannah and Steven would like Paul to be implanted with an abutment-free bone conduction hearing device. It’s new technology that works with an implanted magnet (instead of a screw) to secure a sound processor behind the ear. “It would be nice to get this implant fitted,” says Steven. “If it can help his hearing, that’d be great.”

Paul’s nervous at the thought of the operation, but that aside has big ambitions for the future. “I’d like to be a vet, or if that’s not possible, a farmer.”

Hannah shares, “I want Paul to be happy and achieve what he’d like to. We want life to be as normal as it can. The main thing he misses out on is the social side because of his hearing problems.”

Hannah and Steven put the success of finding alternative hearing technology for Paul down to asking lots of questions. But their story’s not over yet as they consider the options for a more permanent hearing solution for Paul.