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Henry’s otosclerosis

Photo: Read Henry's story

Parents Natalie and Chris didn’t know what to expect when son Henry (8) was diagnosed with otosclerosis, a rare form of progressive deafness. But being proactive and giving Henry a say on things affecting him has enabled him to thrive.

As a toddler, Henry was treated for glue ear and repeated ear infections. “I’d never seen anything like it. It was like someone was pouring caramel out of his ear,” remembers Natalie.

“Henry had two sets of grommets but the first time we suspected he might have a permanent hearing loss was just after he had his second set, when he was about three-and-a-half. He was waiting to be discharged and I went up behind him and whispered in his ear, thinking that now he definitely had no fluid on his eardrum he'd be able to hear me, but he couldn’t hear me at all.”

A series of follow-up appointments and tests followed before Henry was diagnosed with progressive hearing loss and given a hearing aid. “We were heartbroken. I cried, a lot,” remembers Natalie.

“It was quite a shock, but then you adjust because you have to and it’s certainly not the end of the world. We wrongly thought Henry wouldn’t have the childhood we dreamed for him and that he wouldn’t be able to do what every other child could do."

“It was quite a shock, but then you adjust because you have to and it’s certainly not the end of the world.”

When the Ear, Nose and Throat surgeon noticed Henry’s hearing was reducing, he arranged for a CT scan which revealed Henry had otosclerosis. “With otosclerosis the consistency of the bone in the ear changes. We’ve been told it's like cement has been poured into the ear because everything solidifies and the three tiny bones in the middle ear seize up and can’t function,” Natalie explains.

The otosclerosis then took hold in Henry’s other ear and he was given a second hearing aid nine months later.

Otosclerosis is very rare in young children so Natalie and Chris struggled to find much information online. “We rang the National Deaf Children’s Society and we spoke to a couple of consultants at the hospital. We’ve accumulated knowledge along the way,” says Natalie.

“Henry has tinnitus at night. He thought there were bees in his bed which he found terrifying, so our audiologist referred us to a social worker for deaf children.”

“Taking the referral was the best thing we could’ve done.”

The social worker helped with Henry's sleep problems and also helped the family get some funding to learn BSL, which they'd struggled to get for Henry. “She was excellent. Taking the referral was the best thing we could’ve done,” says Chris. “She fought for our case,” adds Natalie.

“A local charity came and taught us family signing in our house. That was brilliant.” Henry now continues to be taught at school by his Teaching Assistant, as set out in his Education, Health and Care (EHC) plan.

The family also had to push for the EHC plan for Henry, with support from his Special Educational Needs Coordinator (SENCO). “While Henry wasn’t years behind, he certainly wasn't level-pegging academically with his peers because he missed out on a few years of exposure to speech. The EHC plan took a long time and lots of assessments but we were fortunate to get one first time,” Natalie says.

Henry was also given the opportunity to try a bone conduction hearing implant (often known as bone anchored hearing aid or BAHA). “As soon as he put it on he loved it – he said the sound was different. After trialling it on a soft band he refused to wear his behind-the-ear hearing aids,” says Natalie.

Henry had surgery for the permanent bone conduction hearing implant in April 2015. “It's his best option at the moment because it bypasses the bones that aren’t working but in years to come we might need to rethink,” Natalie says.

Speech and language therapy has greatly improved Henry’s communication but he used to feel frustrated when he couldn't verbalise things. “He's a really placid little boy but in the past he’s bitten another child or lashed out. Obviously it’s concerning because he’s trying to get a message across,” says Natalie.

“You’ve got to be instinctive; nobody knows your child as well as you.”

“He was using a radio aid system at school and a staff member, who’s brilliant with Henry, helpfully encouraged him to use it more frequently. Henry didn’t want to do this and so broke it by biting the wire. He didn't have the language to say 'I don't like this because ....' We all sat down then and asked him if he still liked it, he said he didn't, so we said no problem. He gets tired using the radio aid and they aren't for everyone.

"We’ll fight for any piece of equipment we think may help Henry, but it’s always his decision whether he chooses to use it. We’re not going to force anything on him. We told the school and they’re completely supportive.”

Natalie and Chris, who also have an older son William (9), have fought, and won, numerous battles for Henry including when his Disability Living Allowance was taken away. “If you want something you really have to fight for it and be a very proactive parent to get what you believe your child needs,” advises Natalie.

“You’ve got to be instinctive; nobody knows your child as well as you – you have to be their advocate.”

“We just want the best for Henry,” concludes Chris. “Obviously as we do for both of our kids, but whatever Henry wants to do we will support him.”