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Harry’s cochlear implant journey

Photo: Harry's story

Lucie and Scott were shocked to discover son Harry was profoundly deaf, but they soon embraced their roller-coaster journey of sign language, assessments and cochlear implants to help Harry hear.

“We didn’t suspect anything,” says Lucie. “Harry was a newborn baby and did everything a newborn baby does.” When he failed his newborn hearing screening they weren’t concerned.

“A couple of my nephews failed their first test so we didn’t think it was uncommon,” says Scott. But after failing further tests, Harry was referred to the hospital at seven weeks old.

He was then tested intensively and the couple knew something was wrong, but they weren’t quite prepared to be told Harry had a severe hearing loss. Minutes later he was having moulds taken for his first set of hearing aids and it felt like everything had changed.

“It was a massive shock,” remembers Scott. “We just wanted to get out of there.”

“When we got our heads round it we realised he didn’t know any better – he hadn’t lost anything.”

“We got home, told our close friends and family and then cried ourselves to sleep,” says Lucie.

“But when we got our heads round it we realised he didn’t know any better – he hadn’t lost anything. But we might be able to give him something – that became our goal,” says Scott.

The couple felt lucky to have a strong network of supportive family and friends. Lucie blogs about being a mum and found writing her post ‘The day we would rather forget’ was the best way to tell everyone else. “Writing that was one of the biggest reliefs. We had so many nice messages of encouragement and support,” she says.

A week later Harry had hearing aids, but they didn’t seem to make any difference. “He had his first proper hearing test at six months and gave absolutely no response,” says Lucie.

“The head of paediatrics diagnosed him as profoundly deaf and asked if we wanted to be referred for cochlear implants. It wasn’t even a decision – we felt like it was the only path to go down.” They also began learning basic British Sign Language (BSL) with Harry when he was four months old.

Over the next six months Harry had 12 appointments to be assessed for cochlear implants, including a hearing test every month, ending in an MRI scan. “It felt like a long, agonising wait,” says Lucie.

“Fortunately the scan showed Harry was a perfect candidate and his operation was booked for six weeks later.”

“We’d googled every question and knew exactly what would happen”

Lucie and Scott had mixed feelings before the operation. “I was petrified. And there was guilt at putting our baby through major surgery of up to eight hours. But we also felt excited as it was what we’d been waiting for,” remembers Lucie.

“We’d googled every question and knew exactly what would happen. We didn’t want to be shocked by anything.”

The day of the surgery was challenging. “Harry wasn’t allowed to eat or drink anything and he didn’t go down until 2.30pm,” says Lucie. The procedure itself took six and a half hours and Lucie then stayed overnight with Harry.

“He was out of it, disorientated, his whole body swollen with fluid from the drip and he was upset, which was the hardest thing. That first night was horrendous, but by morning he was eating and smiling, so it was worth it,” she says. “Harry came home the following evening and the bandages came off that day.”

“He started turning for his name, which was an emotional thing for us, and then started repeating ‘mama’.”

It was another six weeks before the implants were switched on. “We were expecting a massive reaction, even though we were told there might be no reaction. Harry’s eyes went wide but he didn’t cry. But audiology don’t give them the full volume and range to start with as they don’t want to scare them,” says Lucie.

“There’ve been gradual changes to his behaviour since – it’s been a longer process than we thought. He has to go back for appointments every few weeks for tuning and mapping. But in the first week he started turning for his name, which was an emotional thing for us, and then started repeating ‘mama’.”

“The implant processor has three settings which we gradually turn up before Harry’s next appointment when they’re changed for three new ones. The sound is slowly getting louder and changing tone and pitch,” explains Scott. “Harry dances to music on the TV now and he shouts and claps.”

“Now Harry has some hearing he can link words and sounds with signs which helps to bring his speech along,” says Lucie. The family plans to continue to use BSL alongside speech. “We also don’t want to limit his communication with other deaf children,” Scott adds. “We don’t know what lies ahead.”

“I wish we’d spent a bit less time worrying about Harry and more time enjoying him.”

Lucie encourages other parents with a newly diagnosed deaf child not to forget to enjoy them. “Remember they’re still a baby,” she says. “I wish we’d spent a bit less time worrying about Harry and more time enjoying him.”

She and Scott want Harry to have a fulfilled life with no boundaries. “It doesn’t matter if they’re hearing or deaf, you have the same ambitions for your child,” says Scott. “I want Harry to earn lots of money so he can keep us in our retirement!”

Read more about Harry's journey on Lucie's blog*.

*Please note we promote blogs that we think might be of interest to our readers but the opinions expressed in them are not necessarily our own.