'I can hear my kids again thanks to a miracle operation'
Recurring ear infections caused Emma Burtenshaw to lose her hearing in her 20s. The mum of three was forced to learn to lip-read and couldn't hear her baby cry, but an innovative procedure at Dublin's Mater Hospital has given her the gift of hearing and changed her life forever.
Nothing can really prepare you for the news that you’re going to lose your hearing.
That was the case for Clontarf native Emma Burtenshaw, who says the dismal news came “like a bolt from the blue.”
She was 25 years old, had graduated from Trinity College Dublin two years previously and was busy living the life of a single career girl, working in international banking. She had her whole life ahead of her.
Her problems started off so innocuously. Born with perfect hearing, she had started getting mild ear infections in her late teens which became more frequent and harder to treat.
She was finally diagnosed with a condition called stenosis of the ear canal. The repeated infections had left her with a build-up of scar tissue.
When she was eventually sat down by a consultant in the Mater Hospital and told that the damage was permanent and the condition incurable, all she felt was total disbelief.
Even though her ear drums were perfect, the ear canal had sealed over and had therefore reduced her hearing on both sides by 40pc. It would continue deteriorating as she got older and she needed to prepare herself to enter the world of the hearing-impaired.
“I can still remember the shock when I was told that the damage was there on both sides and I should go and see about a hearing aid,” she said.
“I had no inkling that they wouldn’t be able to fix my condition. After all, kids and adults get ear infections all the time and their hearing is completely unaffected. I was just one of the unlucky ones.
“To be honest, I probably hadn’t realised how bad my hearing was until they confirmed the worse. From then on, it was a downhill slope.”
Emma had to learn how to use a hearing aid, learn all about filters and moisture containers and grapple with the social awkwardness of being hearing-impaired.
She remembers feeling “very isolated” at the time and turned to the National Association of the Deaf (NAD) for help.
“I was working in a corporate office at that time and it was difficult to hear the conversations, especially in an open-plan office. I also took a beginners sign language and lip-reading class as I had no idea how bad my hearing was going to get,” she adds.
She went on to marry husband Dave and had her first baby Ciara a year later – which presented new problems. “I couldn’t hear when she was crying upstairs so I had to get a special baby monitor that vibrated.
“Family dinners were very difficult and there were terms that I didn’t get the joke because I had the have the punch-line repeated. I had to tell them to tap me if they wanted to talk to me as if I couldn’t see their lips, I wouldn’t always be able to make out what they were saying.
“It wasn’t easy to learn new ways of communication. I had to learn how to regulate the volume of my voice. If I spoke too loudly, I came across as aggressive and if I was too low, no-one could hear me.
“I had to always have the subtitles on the TV as my family used to joke how they could hear it from space otherwise.
She loved going to see foreign films, as they were “so stress free” with the subtitles.
But she still wouldn’t give up on the hope on one day being able to hear again. “I attended a consultant in the States in 2006, who told me there was nothing to be done,” she said.
Four years later, she had a consultation in the Mater Public Hospital that gave her a glimmer of optimism. “They told me there was an operation being done in the States which removed all the scar tissue from the ear canal. But the success rate was only 5pc so it didn’t seem like a viable option,” she said.
Then in January 2014 and at this point a mum to three children Ciara (13), Alex (11) and Matthew (9), she attended a new consultant at the Mater, Stephen Kiernan.
What he told her was to change her life forever, if she was willing to take the risk, that is.
He offered her two options. The first was a bone anchored hearing aid (BAHA). This was a device that would be fixed into her skull that would deliver sound directly to the eardrum and avoid the ear canal altogether.
“I did a month’s trial with this and found it to be very effective. I wore it like a hair-band on the back of my head and had to try it out in as many different locations and situations as possible, like the theatre and cinema,” she said.
But she was more intrigued by a radical new surgery called a Canaloplasty, which reconstructs the damaged tissue in the ear canal using healthy skin grafted from the patient’s body. It could result in perfect hearing afterwards and the success rate was about 66pc.
Like with any major surgery, there were risks. She would be left with a sizeable scar on her leg and there was a risk of infection, Tinnitus and Vertigo.
Despite some initial trepidation, Emma decided to take the plunge and go for it – becoming one of only four patients to have the surgery.
“They were going to take a skin graft off the top of my leg and implant this on top of the damaged skin in the ear canal, going in through the back of my ear. Apparently the chance of rejection and infection was much lower,” she said. She went on the Mater’s waiting list and six months later, she got the call to say she had a date for her operation.
Emma, who runs Javaholics coffee shop in Fairview, had the surgery on her right ear in July 2014. She wasn’t going to know if it was a success or not until the dressing came out a few weeks later.
Nearly 20 years on from that initial diagnosis of gradual deafness, she was in for a rollercoaster ride.
“I was completely amazed and just burst into tears when the dressing came out,” she said. “It was overwhelming at first. The world had suddenly become a very loud place with all sorts of noises. Although my ears could hear the sounds, it took a while for my brain to catch up. I couldn't distinguish between the sound of the kettle in the kitchen or the boiler in the garage. And my children also seemed very loud. Dave had spent years being the one to get up in the middle of the night when they were crying – now it was my turn.
“I remember going for a walk in the park and for the first time in almost 20 years, I could hear the birds singing without seeing them first. It was like being given a whole new lease of life.”
She had her hearing tested a month later and it was “nearly perfect” again. The journey from deafness into hearing had begun.
In August 2015, she had her left ear operated on. Again, it was a total success and after going back to visit her consultant, he told her that she now has 100pc of her hearing restored.
For her, it has been a miracle operation that has given her a whole new lease of life – and she couldn’t praise the staff in the Mater highly enough.
“I just met an old friend the other day and she noticed that I didn’t need to lip-read her anymore which would have been the norm,” she adds.
Meeting new people and dealing with social situations is now far less fraught for her. And she’s interacting with her family on a whole new level.
“I no longer need all the double checks to make sure that I had understood the conversation. My family think it’s great because they no longer need to repeat everything they say and constantly tap me to make sure I’ve understood. The kids aren’t as frustrated either – although I’m not sure that being able to hear everything they’re saying is that amazing either! For me, this operation has changed my life and to anyone going through something similar, I would always say don’t lose hope. There are new medical innovations every day and you never know what’s out there until you ask,” she ended.