Cochlear implants
Breaking the silence
‘That’s my voice. My voice,’’ Ricky McLeod says quietly, gently touching his left ear. It’s been more than 40 years since he has been able to hear his own words. Four days earlier, he was fitted with a tiny electronic device, a little marvel of sound designed to help replace the hearing he lost aged 10.
With a flick of a switch on the device, he’s able to hear wind, traffic, a plane passing overhead and cicadas, the noisy sound of summer – everything we take for granted.
There are dozens of feel-good clips online showing the activation of cochlear implants, with patients breaking down and crying for joy. But, in reality, it often lacks the emotional punch as the brain tries to process the cacophony of noise it is slowly exposed to.
The first sound McLeod hears is a beep as audiologist Shirley Marshall taps lightly on her keyboard, making small adjustments to the sound processor nestled behind his ear.
A magnet inside fastens it to the implant already inside his inner ear, but McLeod moves gingerly, afraid to knock it out of place.
Marshall turns up the volume gradually. ‘‘Some people find the sound uncomfortable . . . let me know if it gets too much for you,’’ she tells him.
‘‘It’s bearable . . . It’s awesome,’’ he says. She counts to 10. ‘‘It’s not clear, clear, but I can hear it.’’ She boosts the audio a couple of notches and recites the days of the week.
‘‘It sort of sounds like a robot,’’ McLeod says and then stops as he realises he’s just heard his own voice. ‘‘My voice sounds too loud in my head. Will I get used to it? It just seems really loud,’’ he anxiously asks the audiologist.
Later, that apprehension turns to wonder as he steps out of the doors of Christchurch’s St George’s Hospital.
‘‘I can hear something like a rattle gun,’’ he says, stopping in his tracks. It’s the chorus of the cicada, usually imperceptible to someone just fitted with an implant.
Marshall, who also wears the device, is delighted. ‘‘Wow, that’s amazing – just amazing.’’
‘‘It’s strange,’’ McLeod says. ‘‘I can hear the wind.’’ Again, Marshall is astonished – she didn’t expect him to hear so much, so early. ‘‘Aw. Bless him,’’ she says.
She leads him out on Papanui Rd, where he stands for several moments in the bright sunshine, just listening. A bus passes, and then a woman with a pushchair.
‘‘It’s normal,’’ he says, touching his ear. ‘‘It’s good. I can hear the sounds but I don’t know what they are.’’
All of a sudden, his face breaks into a broad grin and points to the sky. ‘‘It’s a plane.’’
‘‘Wow,’’ Marshall exclaims. ‘‘Did you see it first or hear it?’’
‘‘I heard it,’’ he replies confidently, perfectly mimicking the low-pitched whine of the engines.
McLeod, 52, who suffers from conductive hearing loss, has lived in silence for most of his life. ‘‘I don’t know exactly when I went deaf, but I remember when I was about 12, 13 years old at school people started calling me an idiot and calling me names. I could read and write and I knew I wasn’t an idiot.
‘‘I thought something else must be wrong with me. And that’s probably the first time I found out I was deaf.’’
At first, he hid his impairment. ‘‘It was embarrassing, because being young and being deaf, well, it’s not normal.
‘‘I just wanted to be like all my other mates. Normal. So I never, ever told them.’’
He retreated into a lonely world, spending most of his days in a warehouse, stripping down cars for scrap metal.
Where other mechanics listen for the ‘‘smoothness’’ of an engine they are fixing, McLeod places his hand on it, feeling for vibrations.
‘‘He’s a really clever guy,’’ business partner Rick Horne says. ‘‘I’ve been around cars a long time and he’s taught me things.’’
The pair have worked out a good system – when McLeod occasionally needs Horne to hear if an engine is perfectly tuned, he’ll send a text.
‘‘Bro can’t hear or phone and I can’t spell or write, so we make a good team,’’ Horne jokes.
Social situations were isolating. ‘‘Of course I’m lonely,’’ McLeod says. ‘‘They are all laughing and I’m sitting there like an idiot and I don’t know what they are laughing about. I do feel left out.
‘‘It’s all right if I’m talking to them. But once they start talking to each other I drift off. I don’t bother butting into their conversation.’’
He learned to lip-read, by watching television with subtitles. Hearing aids didn’t work, raising his hopes and then dashing them.
‘‘It was too loud . . . It still didn’t make the sound clear, just made it a loud noise. When [my] dog barked that was hurting my ears.’’
In 2015, he was assessed for a cochlear implant and added to the waiting list. He would still be on stand-by were it not for an unknown guardian angel who stepped forward to pay for the $50,000 procedure to be done privately, after reading about his plight on Stuff.
At any one time there are 200 people in that queue – the list currently sits at 215 – and those
are the ones who are lucky to be selected. They can wait five or more years.
‘‘For every one implant that we do, we get five referrals,’’ says Neil Heslop, general manager of the Southern Cochlear Implant programme.
It is a charity, funded by the Ministry of Health to provide public cochlear implant services to children and adults in the lower North and South Islands. It also carries out private procedures.
‘‘People can come in over the top of people that are already on the list and they get shuffled down.
‘‘So now we tell them, ‘You’re not going to be funded.’ Eighty per cent of people are being told that.
‘‘It’s just soul-destroying for the staff to communicate that message to patients. Some staff are in tears.’’
Cochlear implants in New Zealand are not covered by health insurance and only 20 per cent of patients can find the money. ‘‘People have to mortgage their house, approach family, and if they don’t have that . . .’’
Heslop says that can lead to mental health problems. ‘‘They don’t progress, they just deteriorate. Anxiety, depression, isolation.’’
At $8.43 million a year, New Zealand’s national cochlear implant programme represents just 0.04 per cent of the entire health budget.
The government currently provides more than 4000 hip replacements each year at a cost of $171m, 16,000 cataracts with a $44m annual bill, as well as $199m on knee replacements.
It pays for just 86 cochlear implants for 16 newborns, 30 children and 40 adults. There is no waitlist for children.
Last year’s Budget brought no funding increase, although an additional 24 operations were paid for in March, with a one-off injection of $2m.
Clinicians want an immediate boost of $6.4m to pay for 120 adult cases each year – but that would address only the most urgent cases.
Taking the pot to $20m would clear the waiting list.
‘‘A waiting list is a misnomer,’’ says Phil Bird, the otolaryngologist who performed McLeod’s surgery. ‘‘The situation is so dire . . . we get referred roughly 110 people a year and we [at SCIP] have funding for 20. There is no mechanism to clear it.’’
His colleagues have repeatedly criticised the disparity of access to treatment as ‘‘diabolical’’ and ‘‘abhorrent’’.
Bird believes it is also shortsighted.
‘‘The chances of the implant ‘not working’ is way under 1 per cent, so it is a highly effective intervention – virtually all of our patients can benefit.
‘‘And it’s highly cost-effective. So it’s incredibly frustrating to see people that we know we can help hugely, we can change their lives, and not have the funding to do it.
‘‘In a lot of people it’s going to help the country because they’re going to be able to pay tax because [they get] employment opportunities.’’
Bird says there is also a strong, established link between hearing loss and dementia, following a study published in The Lancet medical journal in 2017.
‘‘If they’re an older individual, it’s probably going to keep them out of a rest home longer.’’