Sept 2017 stuff.co.nz

Morgan Mitchell remembers last year walking out of a meeting with his parents a broken man.

For him life couldn't get much worse. He was in a dark place and struggled to bring himself to talk to anyone. The struggle wasn't anything new for the 24-year-old. He is deaf. For his entire life, he has had to deal with the challenges of trying to live life in near silence. But at that point, at that meeting with his parents, it was an all-time low. Mitchell had progressed through the rugby ranks as a promising schoolboy player, while battling the odds through his disability. Moments came and went where he struggled to shake off that disillusioned feeling. He felt his deafness would eventually halt his opportunities in the sport he adores so much. He was the star player during his time at Gore High School and that was recognised at a national level when he was selected in a New Zealand under-17 squad. There were never any doubts about his ability.

Morgan MitchellDeaf Southland Stags rugby prop Morgan Mitchell, 24, of Gore, has had a cochlear implant inserted to help him hear and hasn't stopped him playing rugby.

The question Mitchell had bubbling away in his own mind centre on how far he could go with his rugby, considering the obstacles he had in front of him which other budding young players didn't.

His progression continued after school and by 2014 he was playing in New Zealand's premier provincial rugby competition with the Southland Stags. In many ways, he was breaking new ground. He had played the majority of his rugby without a hearing aid in and relied on his impressive lip-reading skills to get himself through. But he could not hear anyone behind him calling for the ball. To help him in his quest to match it with New Zealand's best on the provincial stage a cap was organised to ensure he could wear his hearing aid while playing for the Stags. Life was good, the doubts faded. He had made it. Mitchell was getting to ply his rugby trade as a semi-professional rugby player. He also spent time in Dunedin training alongside the Highlanders Super Rugby team.

Last year, three seasons into his provincial career, it all took a turn for the worse. Mitchell's hearing continued to get worse and even with his aid in life became a major challenge. "At the end of the [2016] season it was gone," Mitchell said in regard to his hearing. He was back to lip reading on the field and was battling to get himself though rugby games and life in general.

Reality started to dawn on Mitchell. He needed more help with his hearing in the form of a cochlear implant. It is life-changing for those living with hearing difficulties, but for Mitchell, it came with a catch. The initial prognosis was: get the cochlear implant, but give up his rugby dream. The early medical advice was he shouldn't play because of the risk of damage to the device.

That is where that meeting with his parents and that low point for Mitchell featured.

"When I was sitting there with my mum and dad and they said, 'you might have to give up [rugby]', I just walked out of the room, I just couldn't do it. I didn't go back to that meeting," he said. "I was in a dark place, I didn't want to talk to anyone. It was tough. "I can't really explain it when you are deaf and you can't hear anything. It was really tough for me.” His rugby days looked numbered, there was little doubt Mitchell needed the implant. The outlook suddenly brightened, however, when he met Philip Bird - the surgeon trusted with sorting him out with his cochlear implant. Bird provided Mitchell with the hope he was searching for. "He's a rugby man and he said 'don't worry we will sort it'. It's hard to explain but he drilled into my skull a bit deeper so the magnet is quite deep. "He said, 'wear headgear and go for it. If it breaks we'll do it again'. That's what got me up, I just listened to his advice."

No one in the world was playing rugby at a professional level with a cochlear implant, but Bird felt that still shouldn't hold Mitchell back. "I had no concerns about the implant interfering with rugby, quite the opposite," Bird said.  "Top level sport requires a high level of communication before, during, and after the game. A cochlear implant was always going to enhance this.  There is a small risk of damage to the device but it would require a fairly massive blow, directly over the device. If necessary we could always replace it.” Bird said it was nice to watch what Mitchell was now doing, eight months on from when he put the implant in. "I'm thrilled to see Morgan doing so well. It's immensely satisfying to me as a CI [cochlear implant] surgeon as the aim of the intervention is to help the person to overcome their hearing disability and achieve their goals in life. There are some players overseas with cochlear implants but I'm not aware of anyone playing to this level. I have a patient who played rep rugby at primary school level. Fundamentally Morgan's success is entirely down to his resilience, skill, and hard work and the help of a very supportive family," Bird said. 

One person who has watched that determination closer than others is his older brother Brayden.

Brayden captains the Stags and lines up with Morgan in the Southland front row.

"He's a pretty determined bloke, as you can probably see with him playing with a cochlear implant. He's stubborn, especially when someone says he can't do something," Brayden said. 

"It's an awesome achievement with the way he has conducted himself before he had the cochlear implant and after it.

Morgan MitchellMorgan Mitchell, right, defending alongside his older brother Brayden during the Mitre 10 Cup game against Auckland at Rugby Park in Invercargill.

"Obviously there might have been a chance he wouldn't play again. He is pretty inspiring with what he has done. Hopefully there are some younger kids out there going through the same thing and see what he has done and it inspires them."  For Morgan that is just why he is willing to talk about it. He is usually reserved when it comes to talking about his disability, he doesn't like discussing it all that much. But the reason he has opened up about his challenges is he wants to help get a message to other young deaf people. He wants them to know that being deaf shouldn't hold you back. "I see kids [with hearing aids] walking down the street and think that was me. I just want them to know anything is possible. "The way I look at it now, I don't get down any more, I just keep positive. Anything is possible, nothing can stop you. That's my motto, just get out there and get amongst it."

Any problems for Mitchell playing with a cochlear implant have been limited. "At the Auckland game, you would have seen the cord came off and I had to get my [team] doctor to fix it up. It's happened a couple of times, but it's been awesome, nothing is stopping me.” Outside of rugby, life, in general, has also changed dramatically for Mitchell through the cochlear implant.

He is now hearing certain noises for the first time in his life. "I hadn't heard birds before that, he said. When it was first switched on it felt like I was in World War 3 with a bird army. The birds were just going nuts. It was an awesome experience. It's been eight months so I'm getting used to it now."

Mitchell acknowledged he was fortunate to have good family support to get him through the tough times and to the point he now had a much brighter outlook. "It was awesome to have the direction of my mum and dad to get the surgery done.” Eight months on from getting the implant Mitchell is not just playing rugby - he is probably playing the best rugby of his career.

Mitchell said he is still taking baby steps in regard to his rugby but like many provincial rugby players, he holds a hope to play Super Rugby.

Sept 2017 Daily Mail

A nine-year-old cancer survivor who was left with severe hearing loss after chemotherapy medication is able to hear again. Liam Kelly, from Chicago, wriggled nervously as his cochlear implant was turned on, and broke into a huge smile moments later as he realised he could hear the world clearly for the first time in seven years. When his mom Maureen, 38, asked ‘How do I sound?, the perplexed boy, who hadn’t heard her voice properly since he was two, replied: ‘Fine’.

Lim KellyThe brave boy was given just a 30 per cent chance of survival when he was struck down by neuroblastoma, a cancer of the nerve cells, in 2010. Doctors removed a tumour from his belly and he took platinum-based chemotherapy medication to help him battle the disease, which had spread through his body. Liam miraculously pulled through but the medication destroyed sensitive hair cells in his inner ears and left him with profound hearing loss. Six months later, the cancer returned but thankfully Liam beat it again – yet the exhausting battle meant his deafness was a low priority: He used a hearing aid to help him make out certain sounds and coupled with lip-reading, he could just about work out what people were saying. But it wasn’t until he had surgery to have a cochlear implant fitted that he was finally able to hear noises like wind rustling leaves in the trees and birds singing. Mom-of-three Maureen, a nurse, said: “It is heartbreaking to watch your child go through hearing loss when you can clearly the world but he can hear nothing.

Lim KellyLiam Kelly Liam KellyShe shared that Liam’s hearing was perfect before he was diagnosed with cancer, but he gradually lost it because of the medication. He eventually became unable to hear loud sounds like fire alarms, and although he could follow what people said to him if they spoke really loudly, Maureen said, his hearing was ‘similar to that on an 80-year-old with hearing loss.

Liam had a cochlear implant fitted in his left ear in a four-hour operation earlier this year, and three weeks later the doctors switched it on. “It was amazing but we were nervous,’ said his mom, who lives with her husband William, 41, and their two other children, Jack, five, and Erin, two. She continued: ‘I was thinking, “What if he doesn’t like it?” and I was worried he would hear sounds and get upset. ‘But he is such a cool character. He didn’t say much but I said, “Can you hear me?” and he said, “Yep.”

Liam Kelly

Liam KellyDr Nancy Young, a cochlear implant physician at Lurie Children’s Hospital in Chicago where Liam was treated, said Liam’s hearing loss was very significant and hearing aids only provided limited benefit. ‘Using powerful hearing aids to make sounds audible, he could only understand about 25 per cent of words in a typical classroom situation. ‘There were many sounds he could not hear despite his hearing aids, for example soft high frequency sounds in spoken language such as ’s’ and the singing of birds.’ Liam can now fully enjoy his cancer-free life, and he and his family couldn’t be happier to finally be able to move on. ‘It has totally changed his life. It is super. I know it will open so many doors for him,’ said Liam’s mom.

Sept 2017 The Australian

The first time I met Pia Jeffrey there was no chance of a conversation. It wasn’t only because she was six. She was born deaf. The date we met, September 16, 1987, was the miraculous moment her parents, Prue and John, and ­indeed Pia, had been waiting for: it was switch-on day for her bionic ear, a medical device that was both revolutionary and controversial at the time.

Pia O'Donnell

Pia O'Donnell with her children Casey, 10, Larissa, 12, and her mother Prue Jeffrey

It was 30 years ago today and it’s stayed deep in my memory. Pia, pig-tailed, fringed and a bit gap-toothed, looked like she was going to bawl as the cochlear ­implant was activated and she started to hear something she had never heard before: sounds. Then her face creased into a wide smile. She laughed like a normal little girl. The first words she heard, her introduction to the world of hearing and speaking, were from her mother: “Pia, I love you.”

“I can’t remember if I understood what she said,’’ Pia O’Donnell, as she is today, a married mother of two and aspiring scientist, tells The Weekend Australian. “But I understood what she meant.’’

She only needs one word to capture that momentous day: “scary’’.  “It wasn’t what I was expecting, she says of day one. I was ­expecting — I realise now — normal talking, normal sounds. But the first thing I heard was the beeps.”

Pia Jeffrey (age 6)Pia Jeffrey, then 6, with her mother.

The switch-on started at Pia’s primary school in Sydney’s northern suburbs. It was nothing fancy. The doctor in charge decided to do it in the relative calm and quiet of a broom closet. In coming days Pia heard lots of other noises as the 22-electrode bionic ear was stepped up to full capacity. Her immediate favourite was the sound of the toilet flushing. “As a high-pitched noise it was fascinating.’’ She admits a loquacious loo is something she can live without today. She also would rather not hear the crinkling of plastic bags, or any post-80s or 90s music, ­neither of which make her unusual. “I like the Red Hot Chili Peppers,’’ she says, almost shyly. Her 12-year-old daughter, Larissa, joins in. “You hated hearing me play the recorder!”

Mum does not disagree. “Oh, God, it just didn’t sound pleasant.” Her 10-year-old son Casey, who was born deaf and has had a cochlear implant since he was six months old, admits he does disconnect at times, especially when mum and dad are banging on. “Yes,’’ Pia says, “he takes them off and storms off. But, she adds, I am so glad I can hear my children.” Thirty years ago Pia’s sonic shocks came from places the rest of us take for granted. Summer was perhaps the strangest season. “Make them stop!’’ she remembers telling her parents when she first heard locusts. The barbecue, with its sizzling sausages, fried her mind. “Food makes a noise? What?!”

The cochlear implant was ­developed and pioneered by Melbourne-based doctor Graeme Clarke, now 82. The five-hour ­operation at Sydney’s Camperdown Children’s Hospital was carried out by another leader in the field, ear, nose and throat surgeon William Gibson, who talks about Pia and his other young ­patients in Tina Allen’s recent ­biography, Bill Gibson: Pioneering Bionic Ear Surgeon. It was contentious at the time, with some people comparing it with child experimentation. It was different, it was claimed, to conduct the procedure on adults, which started in October 1982 with Melbourne man Graham Carrick. Today, Cochlear is a booming stock market-listed company, ­responsible for about two-thirds of the global hearing implant ­market. More than 250,000 ­people have received Australian-developed cochlear implants, from babies to octogenarians.

Pia Jeffrey

Pia Jeffrey shows her delight at hearing with her bionic ear in 1987.

Pia was not the first Australian child to go aurally bionic. Two boys, 10-year-old Scott Smith and five-year-old Bryn Davies, were the debut paediatric recipients in 1985. A few months before Pia’s operation in August, Sydney four-year-old Holly McDonnell, deaf after suffering from meningitis, ­received a cochlear implant. Today Holly Taylor is married, has a baby girl and is pursuing a ­career in law.

Pia’s uniqueness — though that is not a description she would use — is that she was the first born-deaf child to receive an ­implant, and so the first to learn ­almost all her language through the device. At age six, her vocabulary was 10 words, according to her school reports. Her parents fought hard to change this, fronting medical ­ethics committees to argue their daughter’s case. One night they watched a medical videotape of an adult woman undergoing the ­implant procedure. Unknown to them, Pia sneaked out of her room and watched too. And from the next morning she was ready, suitcase packed, stuffed koala and favourite Rupert Bear book in hand, wanting to go to hospital. “If I hadn’t had the procedure it would have taken longer for the community to realise it works on children, even ones who are born deaf,’’ she says.

There is resistance to this, even now, from some advocates for the deaf, who argue deafness is not an illness that needs to be “cured”. Pia agrees. “It’s not a cure,’’ she says of the bionic ear, “it’s just a hearing aid. At the end of the day every person who has a cochlear implant is deaf. Take them off and they can’t hear.’’ Her choice, though, is to hear. Pia’s father, who worked on swimming pool renovations, died in 2003. He was fascinated by the weather — making Pia and her younger brother Alex, who was also born deaf and has a cochlear implant, stay silent during the TV news weather reports. After a dozen years as a full- time mother, Pia is finishing a ­science degree and hopes to ­become a meteorologist. “I am fascinated with storms,’’ she says. I am tempted to make a joke about being able to hear the wind, hear the rain, hear the thunder — and not keep quiet about it — but it just doesn’t seem right.

Sept 2017 Winchester Sun

Eight years ago, Jess Toews discovered she was losing her hearing. She was diagnosed with type 2 neurofibromatosis, a condition where tumors grow at nerve ends. Since 2009, two huge tumors grew on her auditory nerves, first on her left and then her right. Surgery removed the tumor, which was pressing on her brain stem, and her hearing, on her left side. As time passed, her hearing in her right ear continued to weaken. Medical trials and chemotherapy at Cincinnati Children’s Hospital helped, but the right-side tumor kept growing and Toews lost the rest of her hearing. Radiosurgery in November finally stopped the right-side tumor’s growth.

Today, Toews is hearing in both ears after receiving a cochlear implant for her right ear in February and an auditory brain stem implant in August for her left. “I convinced myself (that) if it works, awesome,” she said. “If it doesn’t, it’s life. I can make it. “I’ll say life is a lot better when you can hear.” 

Jess TeowsWinchester resident Jess Toews holds the devices which allow her to hear again after eight years of being deaf. She received a cochlear implant in her right ear in February. In August, she went through an auditory brainstem implant in her left ear.

The two systems used to restore Toews’ hearing are completely different. Cochlear implants, she said, are connected directly to the cochlea inside the ear. The auditory brain stem implant bypasses all the nerves in the ear and connects to her brain stem, she said. Toews said doctors actually recommended her for an auditory brain stem implant in 2009, but her insurance refused to cover it. The equipment itself, she said, was $150,000. In 2009, doctors simply removed the tumor.

This year, Toews said it was completely covered. The surgery and recovery went better than expected. A 16-hour surgery turned out to take only nine, she said. There were no complications.

“When they test it during surgery, most people only respond around 60 percent,” she said. “Mine was responding at 90 percent. “The doctors told me this was the most perfect surgery they’ve ever done.”

At this point, Toews can hear speech and other sounds only in her right ear. The brain stem implant transmits a series of beeps until her brain learns to hear again. “What a blessing it was when I heard that first beep,” she said. “Maybe that was something God wanted me to learn in eight years. Maybe I appreciate it more now.” Now, Toews gets to hear everything. In March, she heard her two children say “I love you” for the first time. “I’m finding all kinds of fun things,” she said, “like the turn signals in the car make noise. Baseball games are really loud. It’s a whole new journey of what everything sounds like.”

Toews has also connected with others who have received the same brain stem implants.

“How fun is it that we’ve made our own little support group?” she said. The best, she said, is being able to hear her children. “I’ll ask my husband, ‘Why am I so special that God decided to give my hearing back?’” she said. “I feel so lucky, so blessed with this amazing gift.

“You don’t take anything for granted. Nothing … kids’ laughs and screams and cries can be annoying but you may not have it tomorrow.”