At three months old, Freya was diagnosed with a mild hearing loss which professionals had hoped would remain steady, however by 12 months old her hearing loss had progressed.
“Freya initially wore a bone conduction hearing aid due to issues with fluid in her ear. When she was 13 months old and the fluid was improving, she was fitted with her first pair of hearing aids,” Emily said.
Finding out about Freya’s hearing loss and the experiences that followed felt like a rollercoaster of emotions for the family.
“Due to the floods some of our family were displaced, some were away and others were around children who were unwell, we didn’t have many family members able to visit when Freya was a newborn. We mostly kept the news she’d failed her hospital hearing screening to ourselves,” said Emily.
On the first newborn hearing screen Freya was referred on for further testing of her right ear.
“Our first two children passed on the first test, so this was new for us. I had started to suspect Freya did have a hearing loss due to her nature – she was the most quiet baby, and apart from birth she only cried on one occasion during our hospital stay.”
The family met with an audiologist at the Townsville University Hospital when Freya was three months old for an ABR test to confirm if Freya had hearing loss.
“I can remember the room clearly, and black leather chair I sat in. It was a small room with a door that had a tiny window with a blind. It took two hours to do the test, and at the end the audiologist quietly said, ‘I’m sorry to say she has a hearing loss in both ears, worse in the right ear’,” Emily said.
“I remember looking at my husband and silently crying. It was the unknown of what we faced and what our daughter would face.
When Freya was five months old she had specialist genetic testing to find the cause of her hearing loss, including a heel prick to test for cytomegalovirus (CMV).
“This was the first of many tests we would wait on. This was one of the hardest parts of our journey, waiting on results,” Emily said.
They were referred to an ENT for review of Freya’s ear canals to see if Freya had any malformation or structural issues with the ear canal, who then referred them to Hear and Say in Townsville for speech therapy and audiology services.
“We met with Amy from Hear and Say before Freya was 12 months old and had an initial consult, and when Freya was almost two we met Liza and started speech therapy sessions – Freya responded the best she ever had with the Hear and Say team,” Emily said.
“It was the first time we could complete a hearing test in one sitting. Liza and Lisa changed tactics when Freya became disinterested or distracted. It was for me, one of the best experiences.
When Charlie was six years old, he had an accident, falling out of a tree and suffering a head injury, with fractures to the bones in his middle and inner ear. This left Charlie with a profound hearing loss on his left side, a diagnosis his family were not expecting.
“I think it would be fair to say we were bewildered and shocked. We had no idea what this diagnosis meant for Charlie or how we would help him. We had no real understanding about the path we were about to travel,” said Jacqueline, Charlie’s mum.
During this challenging time, Hear and Say was front-of-mind for Jacqueline and her husband Matthew, having already been to the centre a few years prior.
“During this time Hear and Say was pivotal in presenting information, answering our questions, arming us to support Charlie and advocating for him.
“Hear and Say made us brave,” said Jacqueline.
The next big step was deciding that a cochlear implant would be the best approach for Charlie.
“Since our decision to go ahead with a cochlear implant, Charlie’s journey has been smooth and progressive with the assistance from Hear and Say.
“Just months after receiving the implant, Charlie is understanding conversational language through the device and is eager to do his listening homework so he can directly stream the TV to his cochlear implant.
On reflection, Jacqueline says the experience was better than she expected, and was impressed by how well Charlie adapted to his new situation.
“It has, at times, been emotional and daunting but in hindsight so much smoother than we originally anticipated.
“Charlie’s love of sport has helped in his recovery and resilience, he always throws himself into any sport or challenge that he can, and now this includes his hearing journey,” said Jacqueline.
It was important to Jacqueline and Matthew that their son be connected to the world of sound.
“We wanted to enable him to be who he was always going to be.
Today newborn babies in Australia have their hearing tested while in hospital, but when Lily was born this process was not yet introduced.
Lily had surgery for her first cochlear implant on her right side when she was one year old, followed by one on her left side at eight.
Lily’s hearing devices have made a huge difference to her life and who she is.
“Without my cochlear implants I wouldn’t be able to experience the true feeling sound brings to me. Being able to hear my loved ones talk to me, listening to my favourite artists or TV shows and so much more. Hearing allows me personally to connect with the world.
“I use the Bluetooth feature on my cochlear implants to stream music almost every second of each day. I find comfort in music, it’s like having a coffee in the morning for me,” said Lily.
While reflecting on the path her life has taken, Lily shares some insight on her schooling experience.
“I got questioned frequently when I was growing up, and this was something that I just had to accept because not everyone in the world is deaf, and not everyone knows what ‘those things on your ears’ are.
“When people asked questions or showed an interest in learning about cochlear implants it made me feel heard, which is something that every person who is deaf wants.”
Along with these questions from her peers, Lily was also grateful for the teachers she had at school.
“Every teacher that wore the FM system would always say ‘I feel like a rockstar’.
“When I just started high school, one of the first bits of homework that everyone except me got, was to research what cochlear implants were and we then talked about it in the next lesson. I’m not sure what the best part about that was, people learning something significant about me and other people who are deaf, or the fact I didn’t have to do the homework!”
“The hairstyles were one noticeable difference though; I could only wear my hair certain ways so that my cochlear implants stayed on. Every mum with a sporting kid knows the ‘tuck the implant under the hair’ trick or the need to resort to headbands.”
Putting the vast quantities of bobby pins aside, Lily found her hearing loss to be a positive addition to her sporting career.
“I always try to look for the beauty in everything in my life and being a gymnast, I was able to promote hearing loss and disabilities in an extreme sport.”
Taking this positive outlook with her, Lily is now teaching the sport she loves.
“I’ve worked as a gymnastics coach ever since I stopped participating in the sport myself and I absolutely love it. I even coached kids who were deaf which made it even more special.”
When Bláthnaid was just four days old her parents were told she failed her newborn hearing screen.
“From there, we had lots of referrals to various testing appointments. When she was around eight weeks old, it was flagged that the hearing loss was more than ‘just birth fluid’ and it was looking like a sensorineural hearing loss, with one ear having a more significant loss than the other,” said Vicki.
“I think ‘shock’ sums it up in one word! But as soon as we knew some things started to make more sense. She was very hard to settle, especially in the car – of course, she couldn’t hear us talking to her, playing music, trying to calm her. Only holding her helped, which isn’t possible when you are driving the car,” she said.
“Although we knew very early about Bláthnaid’s hearing loss, and she was fitted with a hearing aid when she was four and a half months old, it wasn’t until she was six months old that we finally found out what had caused her hearing loss.
In late 2019 Bláthnaid’s hearing loss progressed and she was diagnosed as profoundly deaf in her left ear, and the hearing in her right ear continued to fluctuate. Following a series of testing, in June 2020 she underwent surgery for a cochlear implant for her left ear.
“The change in her speech and development has been amazing to watch. Despite having to make such a terrifying decision, it was definitely the right thing to do,” said Vicki.
During their journey the family had started to come to Hear and Say for hearing tests, weekly speech therapy and after the surgery, cochlear implant programming too.
“Hear and Say have helped us through the transition from hearing aid to cochlear implant, they supported us to develop our knowledge around the changes in technology and also the additional speech supports Bláthnaid needed,” said Vicki.
Jessica’s aspirations also drew on her own experiences with the health community, including having developed a hearing loss in childhood which resulted in Jessica wearing a hearing aid in her left ear and attending Hear and Say for specialised speech therapy.
“Thanks to the support I’ve personally received from both professionals and my loved ones over the years, I’m able to clearly listen and speak. This has given me an immense number of opportunities in terms of both my career and general life,” said Jessica, who in between work loves playing football, going to the gym, visiting the beach and spending time with family.
“Throughout high school I was like any other kid, and I have been able to communicate at university and now progress into the career of my dreams.”
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Greg has contributed to social change in a wide range of settings, from youth employability in Latin America, to remote learning across Asia and Africa. He values partnerships, and has held executive roles in the corporate, government and not-for-profit sectors.
Greg reflected on the journey ahead for Hear and Say his strategic plans for the organisation.
“In the short time I’ve been here, I’ve been able to see the profound impact of Hear and Say’s work on the lives of children and their parents and siblings,” said Greg.
“It’s beautiful to see a parent’s love for their child in those moments, and their pride in the progress they make in those early years,” he said.
“I know a lot of our supporters have been able to experience those moments and I am looking forward to welcoming them back to reconnect in person, as COVID-19 eventually recedes from our daily life.”
“Many people are surprised to learn that it takes much more than just switching a cochlear implant on for a person who is deaf or hard of hearing to be able to hear,” explained Tracey.
“At Hear and Say, our team of qualified audiologists and speech pathologists work to ensure cochlear implants are successfully ‘tuned’ (or MAPped), and that the users are trained with the listening skills and techniques to use their technology in everyday environments through optimal hearing, listening and speaking.
“For example, someone might use a mini microphone when in noisy settings, such as a restaurant, to help clearly hear others speak. Another great training exercise is to practice listening when you’re alone – for example, listening to music or a podcast to help make listening through the cochlear implant feel more like natural hearing over time,” said Tracey.
The number of adults who have received cochlear implants has rapidly increased over the past decade and these numbers are expected to continue to grow. This team of researchers therefore saw the need to better understand the research which currently exists and the outcomes in this space.
Research has found that 94 per cent of Australians don’t realise that clear speech can be the main form of communication for children born deaf or hard of hearing1, it can even come as a surprise to those who study speech pathology.
“When I started at Hear and Say, the biggest surprise I had was realising how well children can hear and communicate with the appropriate hearing technology and listening and spoken language intervention,” said Josh.
It takes a bit of work to achieve these outcomes – Josh goes on to explain exactly what might be involved in a specialised speech therapy lesson.
“In lessons, I use reading books and storytelling quite often – they are fantastic methods for developing important language and listening skills from an early age. I also routinely sing songs (poorly, I might add), as there is so much potential for engaging communication and listening opportunities during nursery rhymes and singing.”
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“Every club sent letters to politicians very frequently asking for the program to become adopted in Queensland – needless to say, this did not happen overnight,” said Christene.
At this time Hear and Say’s Founder, Dr Dimity Dornan AO, was also working closely with Quota to help ensure hearing loss was detected as early as possible.
“We knew how critical those early years were for babies brain development, it was a milestone achievement when the Universal Newborn Hearing Screening program was rolled out across the state in 2004. It allowed us to identify hearing loss quickly and give babies born deaf the opportunity to hear and speak along with their siblings and peers. We are forever grateful to Quota for their hard work in ensuring this result,” said Dimity.
Jumping forward 30 years and Quota Gold Coast are still right by our side, participating in Loud Shirt Day, donating much-needed resources for therapy lessons, and holding fundraisers.
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29 Nathan Avenue, Ashgrove Qld 4060
ABN 32058 430 069
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We acknowledge the Traditional Custodians of all the lands on which we meet, work and live, and pay our respect to Elders, past, present and emerging. We respect their continuing culture and the contributions Aboriginal and Torres Straight Islander peoples make through their resilience and strength.
29 Nathan Avenue, Ashgrove Qld 4060 ABN 32058 430 069
Acknowledgement of country
We acknowledge the traditional custodians of all the lands on which we meet, work and live and recognise that this land has always been and always will be Aboriginal and Torres Strait Islander land.
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