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Cody’s glue ear

Photo: Cody's story

“He was always having tantrums, was often naughty and ignored me when I called him. He was like Jekyll and Hyde, happy one minute then raging. He even had anger management therapy, but that didn’t help,” remembers Michelle.

Cody was born with a cleft palate and it was during one of his routine check-ups, soon after he’d started school that reasons for his behaviour emerged. “He had an ear infection and the consultant sent him for a hearing test,” says Michelle. “The audiologist diagnosed glue ear, which is common in children with a cleft palate. She said he was moderately to severely deaf. It all made sense  his behaviour was due to frustration because he couldn’t hear properly.”

Within a few weeks Cody had grommets inserted. “His hearing was no better though, nor his behaviour and the grommets fell out within weeks,” says Michelle.

When the doctor suggested more grommets, Michelle refused. “He’d already had 10 operations, including for a hernia, several on his mouth and two major ones for his cleft palate, and I didn’t want him having unnecessary surgery. I wanted him to have some childhood.”

“His behaviour improved and, best of all, he’d actually talk to people.”

She opted for hearing aids, which were fitted a week later. The difference was immediate. “He was so bright-eyed, like ‘Wow I heard that!’ He kept asking me why I was shouting! His behaviour improved and, best of all, he’d actually talk to people whereas before he wouldn’t. He’d been quite withdrawn. Now he joined in with other children and made friends,” smiles Michelle.

Cody had missed lots of school due to medical appointments, colds and ear infections, especially in winter, and lagged behind his classmates. But once he had hearing aids, his Teacher of the Deaf arranged for one-to-one support at school – including after-school clubs – and Cody began making progress.

But Cody continued to get ear infections and in one year had 12 courses of antibiotics. By the time he started secondary school he was more than two years behind his peers, so he went into a ‘fast track’ class, for extra support.

“It was his primary school head teacher who recommended putting him forward for it; lots applied but there were only 11 places,” says Michelle. “Being in a small class means they each get lots of time with the teacher, so they learn better.”

Cody’s glue ear persisted, meaning he kept having to go back and forth between his GP and ear, nose and throat (ENT) specialist where he’d have micro-suction to clear wax, which helped keep infections away.

“The operation took eight hours.”

Last Christmas, an MRI scan and an exploratory operation revealed infection had gone deeper into Cody’s ears and started eroding his mastoid bones. Risks included meningitis if the infection spread further towards his brain. So in July, Cody had a mastoidectomy on his left ear to remove the infection and smooth out nooks and crannies inside his ear where fluid could collect. He also had a tympanoplasty to repair his eardrum.

“It was really frightening, the operation took eight hours,” says Michelle. “But a hearing test showed his hearing was up by 40 decibels. His consultant gave a 15% success rate of removing the infection completely. Cody couldn’t put his left hearing aid in until it healed but he could hear as well as if he’d been wearing it! Thank goodness, after all he went through, it worked well.”

But the real test is this winter, whether the glue ear stays away in that ear. Next year he’ll have the same done to his right ear. Meanwhile everything’s going well for Cody; Michelle is thrilled with his progress.

“He’s still two years behind, but he’s getting there. We’ve been very lucky and had good support, mostly arranged by his Teacher of the Deaf. There’s a children hearing impairment team (a CHIT, made up of a group of professionals involved in Cody’s care, including his Teacher of the Deaf, audiologist, speech and language therapist and teaching staff) who meet regularly to discuss Cody’s needs.

“He’s so confident, he’ll do anything, talk to anyone.”

“Since Cody’s had hearing aids he’s become the most outgoing person around! He’s so confident, he’ll do anything, talk to anyone. He loves animals and goes horse-riding. He belongs to a youth club and has good friends. If he’s had an operation, or has a cold, his balance is off and he stumbles and his mates will walk close beside him,” says Michelle.

“Last term Cody was awarded a 100% attendance certificate and he’s thrilled – it’s the first time he’s not been off with ear infections, as the micro-suction stopped infections building up. Cody doesn’t have a disability, it’s a way of life and it’s not holding him back at all.”