Early child cochlear implant recipient sets sights on audiology - thanks to sound
In 1995, three and a half-year-old Nick Jones was among the first children in New Zealand to receive a cochlear implant under the expert care of pioneering surgeon Dr. Bill Baber.
Almost three decades later, Nick and Bill’s paths crossed again. This time within the walls of The Hearing House.
Nick, now 30-years-old, is in his final year of study to become an audiologist. While Bill, our country’s longest serving cochlear implant surgeon, is putting down his scalpel after more than 35 years.
Their encounter was a chance to reflect and celebrate the life-changing technology that has had a deep impact on them both.
Pioneering paediatric surgery
Nick was born in 1991 with profound hearing loss. With no newborn hearing screening to identify his deafness and a high level of responsiveness to expressions, it was unnoticed for 17 months.
“It was my grandad who realised I might be deaf,” says Nick.
“With my hearing loss, all of the hair cells in my cochlear are dead so they don’t raise when they detect sound.”
When the opportunity to receive a cochlear implant arose, his parents faced a big decision based on little evidential success in children and strong opposition from the Deaf community. Until then, only adults had undergone the innovative surgery.
They did a lot of research but it was a comment made by Bill’s counterpart, surgeon Dr. Ron Goodey, at the time that convinced his parents to go ahead.
“He said to them, ‘if it was my grandchild, I would do it,’” says Nick.
Bill remembers Nick’s surgery with clarity. He was one of three children implanted in quick succession.
“We had some children with meningitis, which caused total loss of hearing and we were worried that it could close off their cochlear duct. I remember going to a meeting overseas and a French surgeon got up and said ‘that is an emergency, you've got to get one [a cochlear implant] in very quickly!’
“Of course we didn't really have enough funds so we just told the health department that we were going to do it and they had to fund it,” says Bill.
While Nick’s hearing loss wasn’t caused by meningitis, he was also able to receive a cochlear implant for his right ear alongside the other children.
“Suddenly we were right in the paediatric field, which was an exciting development for the CI programme,” says Bill.
“Of course the government now recognises the importance of getting children implanted in both ears quickly and early.”
Adapting to life with sound
Upon learning of her son’s deafness, Nick’s mother, Barbara, began learning New Zealand Sign Language to help Nick communicate.
He says his knowledge of NZSL before knowing spoken language helped him adapt to communicating with access to sound.
One of his first memories is going to school with a ‘big bulky’ processor and FM system attached to him. Barbara would sew little pockets in his clothes to hold the processor.
“It was quite a big learning curve but I think I adjusted to it pretty well.”
Nick credits a strong support network - at home where he grew up in small-town Otorohanga, within the community, and from The Hearing House - for his success in learning to communicate orally.
He says his mum went “the extra mile” to make sure he was doing the best he could in his speech development, setting out numerous homework tasks to help his development.
“I wouldn’t be the person I am today without the help and support from my whole whānau,” says Nick.
He also had a dedicated teacher aide, Anna McKey, who played a significant role in his school years, and developed a close bond with his longtime rehabilitationist at The Hearing House, Ellen Giles.
Bill agrees. “The support of the family in the initial stages as a person gets used to the sound, making them do a bit of homework, that's really quite an important factor in the success.”
Still, like many cochlear implant users, there are challenges.
“I have to concentrate really hard sometimes to hear. At times I used to get tired at school because I used to be concentrating quite often, making that extra effort just to listen - especially when there’s background noise.”
He says his cochlear implant has taught him to adapt to different situations, and find strategies to make hearing easier. If he’s watching a movie he prefers those with subtitles. At a restaurant he will find a table on the outskirts of the room.
“If I'm walking alongside someone, I’ll make sure I’m on the left side because my implant is on the right.”
Nick says having access to sound in one ear is frustrating at times, particularly because the technology has developed so much since his surgery. Both he and Bill believe a second implant would improve his quality of life.
“I’m into sports. In football, being a team sport, everyone’s calling my name and I’ve got the ball and I have to rely on my visuals to pick up where it’s coming from. That extra amount of effort, and sometimes I lose the ball. It can be annoying.”
The short battery life of his implant is also a frustration, forcing him to frequently change his batteries.
However, as an adult he is not eligible for funding. The $50,000 cost to fund it privately is unachievable for him and he is considering going to Australia for a year to get the surgery there under Medicare.
Returning to The Hearing House
Despite his frustrations Nick is incredibly grateful for his implant and has found success and high achievement in many areas of his life.
He is a qualified architectural draughtsman but didn’t find his feet in the industry so started searching for something more fulfilling to him.
His lightbulb moment came during an appointment at The Hearing House with Ellen - who had supported him with rehabilitation since he was a teen - when the prospect of audiology revealed itself.
“I observed a day at The Hearing House, at Waikato Hospital and at a private practice. I absolutely loved it.”
So he returned to Otago Polytechnic for a year - “I worked my butt off” - to upgrade his diploma qualification to a degree, which would enable him to apply for the audiology programme.
It worked and, despite earning a nomination for a major design award for his portable opera house concept, his sights remained firmly on audiology. To his relief, he was accepted by two universities, and is pursuing the two-year Masters programme at the University of Canterbury.
Now in his second year, he requested to return to The Hearing House in Auckland for some practical experience working alongside our team of audiologists.
“I couldn’t be an audiologist if I didn’t have a cochlear implant, and ever since being back at The Hearing House I’ve never felt more helpful,” says Nick.
Once qualified Nick hopes to be able to work at The Hearing House, a place where he feels like he’s meant to be.
Bill echoes Nick’s feelings.
“It's a fantastic facility. It's not a scary big high-rise or part of a hospital, because what we’re doing isn’t for disease.
“Having appointments away from a hospital setting is really nice for CI users and quite important as well.”
“The Hearing House has surpassed everything we could’ve wanted… which is fantastic, but you’ve also got everybody there who should be there.”
“I’m in a unique position where I can use my own experience to really help other cochlear implant users. I think it will go a long way,” says Nick.
Our CEO Dr. Claire Green feels we have all benefited from our very special journey with Nick and his family.
"We all think Nick is fantastic. He has experience of The Hearing House through his journey as a cochlear implant user, and we have been lucky enough to welcome him back to the Hearing House – a place he says feels like he is coming home to."
"Nick spent his uni holiday time with us a couple of years ago on work experience to see for himself to see if audiology was something he wanted to do. It was, and it is a pleasure to see him embarking on his studies with so much enthusiasm - returning this summer for his placement hours and staying on with us doing far more than required by his university."
To top it all off, Nick is determined to rediscover and build on his knowledge of NZSL.
“Signing is so valuable, it played a significant role in my communication skill development and I want to be able to connect with every person I’m supporting as an audiologist, no matter what their mode of communication is.”