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Alex's experience of cholesteatoma

Photo: Alex on a walk with his sister at Christmas time

When Alex's consultant first mentioned cholesteatoma, his parents were shocked. "Anything with 'oma' at the end, you immediately worry that it's some kind of cancer," remembers mum Maria. 

At 16 months old, Alex had battled constant ear infections and glue ear for most of his life. Although the GP thought the infections would go away on their own, Maria couldn’t shake the feeling something was wrong. When a private consultant suggested grommets, Alex’s parents were relieved.

“I had glue ear as a child,” explains Maria. “I’d had grommets myself, so I understood how they worked.”

The consultant warned Maria and husband Scott that he could see small white patches in Alex’s ears, but they were hopeful the grommet surgery would spell the end of Alex’s ear problems. So, when the consultant came back after the surgery with Alex’s new diagnosis, learning that he’d need more operations was devastating.

“It was a lot to process,” says Maria. “It wasn’t until we got home that we realised we were in it for the long haul.”

A cholesteatoma isn’t anything to do with cancer. It’s a benign skin growth in the middle ear. They’re usually caused by recurrent ear infections, but Alex’s cholesteatomas were congenital, meaning he was born with them. If they’re not removed, cholesteatomas keep growing and can cause permanent deafness, brain abscesses or even meningitis.

Now four years old, Alex has had 10 operations on his ears, all under general anaesthetic. “The older he gets, the better he handles them,” says Maria. “When he was younger, he didn’t like cannulas, so the anaesthetist had to use gas. For his first operation, he was 16 months old but big for his age, and it took three adults to hold him down while they administered the gas. Now he’s older, they do the anaesthetic by injection. It’s a lot less stressful – for him and for me!”

"There needs to be much better awareness of cholesteatoma."

The family has developed a routine around Alex’s operations. While Alex and his parents go to hospital, big sister Emilia is looked after by her godparents. “She gets excited because her godmother takes her to school, which is a novelty!” laughs Maria. “She understands that Alex has special ears so sometimes we need to spend more time with him.”

At the hospital, the children’s ward has a toy car which takes Alex down to surgery. When he wakes up, he enjoys ice lollies and videos. “We're lucky to have those extra things to take his mind off it,” says Maria.

Having a routine also helps Alex’s parents stay calm. “Although it's really hard for the child going through operations, people forget that it's difficult for the parents as well,” says Maria. “It's perfectly normal to feel bogged down or tearful.

“The first couple of times I took him down for anaesthetic I cried, but although you’re always anxious and concerned, you do get used to it.

“Scott tends to worry during the operation, whereas I’m quite calm. I get more worried afterwards, once we learn what they’ve found or done during the surgery. We balance each other out!”

Alex’s last cholesteatoma surgery was done shortly before the coronavirus (COVID-19) pandemic. When the consultant needed to remove a scab from Alex’s eardrum after the operation, the country had gone into lockdown so he could only have one parent with him and dad Scott took him alone.

“Alex was really good,” says Maria. “He just lay down and let them take the scab out. The consultant was wearing full PPE, including a gown, a mask and a visor, but Alex just said he looked like an astronaut! He’d seen and heard about the pandemic and we’d explained why people wore masks, so he was prepared. But he was slightly annoyed that they’d taken all the toys away from the waiting room!”

Although Alex’s cholesteatomas were caught early, he’s been left with moderate hearing loss and delayed speech. “I’m glad I went with my gut instinct,” says Maria. “If we’d listened to the GP and waited until Alex was five for him to get grommets, he might have totally lost his hearing. We’re lucky to have private medical insurance through Scott’s employer, but most people don’t. Many children aren’t diagnosed for years and it can cause serious problems. It’s not fair.

“There needs to be much better awareness of cholesteatoma. We recently saw a GP who’d never heard of it, so I had to explain! I think if people knew more about cholesteatoma symptoms, they might feel more confident asking their child’s GP whether they’ve considered it.”

For now, Alex is enjoying reception year at school with his friends from nursery. He wears Spiderman hearing aids, has speech therapy and uses a radio aid at school.

“I feel sorry that Alex might have to have more operations, but cholesteatoma’s just part of our family life now,” says Maria. “It’s always a blow to learn that he's got another one, but we know what he's got to have done each time. These things come along but there's light at the end of the tunnel.

“We were recently delighted to hear that Alex’s most recent operation has significantly improved his hearing in that ear. Our consultant is a miracle worker!”

As if on cue, Alex interrupts his mum. “Can you be quiet?” he asks. “I can’t concentrate on my puzzle!”

Maria laughs. “He's a very sociable little boy. He fits in so well with his peers. He just needs a few reasonable adjustments and hopefully he'll thrive.”