When Maggie and Peter’s daughter Megan was diagnosed with cholesteatoma it was a completely new concept for the family. They soon found out how little others knew about it too…
When the specialist consultant told Maggie that her daughter had cholesteatoma in both ears, she didn’t know what to think. “I really didn’t know anything about it,” says Maggie. “So I read everything on the internet I could. Apart from our consultant there was nobody to explain anything to us.”
Megan’s hearing loss was first picked up in reception when she failed two hearing tests. “I think they thought it was glue ear,” remembers Maggie. “She had a set of grommets when she was five but the registrar wasn’t able to insert one of them so she was transferred on to a consultant.”
They put in another set of grommets later that year but further investigations showed she was developing cholesteatomas in both ears and would need operations to remove them.
“Cholesteatoma wasn’t classed as a hearing loss.”
Because of the problems it causes in the middle ear, Megan was given a bone-anchored hearing aid (BAHA) on a soft headband. “She wore it for school but it was uncomfortable and pressed tightly on her head,” says Maggie.
After the diagnosis, Megan had hospital appointments every three weeks and had the first operation in her right ear a few months after the initial diagnosis.
“There was no room to breathe,” adds Maggie. “The operation was to remove the dead skin cells that form together, because they erode the bone. The cholesteatoma had grown into the three little bones (ossicles) and eroded them so the surgeon had to rebuild them.”
In November 2013 Megan had an operation called a mastoidectomy in her left ear. “The cholesteatoma had grown into the mastoid bone behind the back of the ear,” explains Maggie. “The surgery was quite invasive and she was quite poorly for the week after.”
“It’s very hard on the child knowing that they’re going to go through a major operation.”
Maggie thinks people don’t always understand the psychological effects of such an operation.
“It’s very hard on the child knowing that they’re going to go through a major operation. Two of the possible side effects are partial facial paralysis and coming out profoundly deaf. There are other effects too – Megan had to stop swimming for seven months because the moisture could lead to more ear infections.”
The family still doesn’t know if the cholesteatoma has completely gone. “She gets repeated ear infections that cause horrendously smelly discharge and her hearing’s dropped twice as well,” says Maggie. “We’ve just got to keep our fingers crossed.”
Megan now has a mild to moderate hearing loss and wears hearing aids. Luckily, she gets on much better with them than she did with the BAHA.
“They’re bright red,” says Maggie. “I think she treats them more as an accessory. And she knows how to change the batteries, clean them out – they’re hers and she looks after them.”
“You’ve got to keep talking to the schools and explain to everybody.”
Maggie thinks there needs to be more awareness of cholesteatoma. Megan attends a mainstream school with a hearing impaired unit, but because she isn’t classed as having a hearing loss she isn’t included in the unit.
“It’s classed as a disease because some children come out of the operation fine,” explains Maggie. “You’ve got to keep talking to the schools. Hopefully the more teachers that know about it the more help that child can get.”
Megan has found school academically challenging. She struggles with working memory loss, word processing disorder and dyslexia. “If you put them all together it can cause one big problem, especially with reading and maths, but we haven’t found much support out there from external services.”
“You’ve just got to stay strong.”
The fact that Megan’s cholesteatoma might come back is a big worry for the family. “You’ve just got to stay strong. It’s really hard,” Maggie sighs. With the future uncertain, Maggie’s main hope for Megan is that she’s happy. And Maggie will continue to raise awareness of cholesteatoma and encourage others whose children are going through it to do the same.