Two-year-old Freya from Townsville is quite the ballerina, off to the local studio each week, performing on stage at concerts and practising for exams with her older sister, Arianna.

“Freya has come out of her shell since she started ballet – she is incredibly reserved and it took a number of weeks before she would even attempt the classes,” Freya’s mum, Emily said.

Giving Day, Girl Smiling

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.

“Freya had a second test and failed on both ears this time. We were still advised it was most likely fluid, however a failure on both ears could indicate a hearing loss.

“I remember feeling so hopeless and alone, my husband wasn’t able to visit as he was caring for our other children, so I was in hospital on my own trying to make sense of it all.

“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.

Freya With Backpack

“My husband held me in the car park and we both cried. It was the one and only time he has ever cried about Freya – Matthew is the strong one.

“When our daughter Arianna was told she said, ‘she can share my room mum, when she is older, I can be her ears at night’.

Freya With Sister

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.

“We have also noticed the difference it has made with Freya – she is a shy and reserved little girl. Freya would only speak to her family, and simply smile at anyone else or look away.

“Since coming to Hear and Say, Freya is talking with others – she is also communicating with her peers at day care, which she wasn’t able to do for quite some time.

“It has made such a remarkable difference and we don’t believe she would be where she is today without the regular speech therapy she does with Liza. It’s one of Freya’s highlights for the week.”

Hear and Say aims to empower parents to be their child’s speech and language teacher, arming them with the knowledge and tools they need.

“Liza has not only worked with Freya, but with our entire family. She has provided us with examples of ways to continue lessons at home and given us a plan and goals to work towards.

Reflecting on their experience over the last two years, Emily and Matthew wished they could tell themselves that there would be hard days, but there would also be joy – it would be okay.

“We are so thankful we live in Australia where we are supported through the National Disability Insurance Scheme [NDIS] and Hearing Australia to improve Freya’s life.

“She is incredibly blessed and has opened our lives to the deaf or hard of hearing community. We have met so many families through our journey and we are forever grateful for our Freya and her special ears.”

Emily and Matthew are also inspired when they of Freya’s future, she will be able to hear, listen and speak like her siblings Arianna, Mateo and Emelia.

“Our hope for Freya is to rise above anything she will experience in her life and show that she is more than her hearing loss, eye impairment, anything,” Emily said.

“We will be there to support her and help her achieve whatever it is she sets her sights on.”

Charlie is always up for a challenge or a game - at just eight years old he is an all-rounder with a love for rugby, swimming, soccer, chess and stem activities.

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.

“Charlie had a number of speech disorders as a young child. He had speech therapy when he was four-years-old at Hear and Say, as well as occupational therapy,” said Jacqueline. 

Going back to an organisation they knew could help felt like a good place to start their family’s journey.

“We started by educating ourselves, monitoring Charlie's progress and accessing the support and wisdom of families in a similar situation.

“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.

Img Charlie With Lama

“He used apps for his listening homework, they were based on levels and scores which really motivated him. He progressed quickly from the apps to listening to podcasts through his cochlear and then watching TV shows like Pokemon,” said Jacqueline.

Charlie's Family

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. 

“We never wanted to take anything away from Charlie. Reconnecting him with the world of bilateral sound allows him to continue to engage with friends, to confidently participate in sport and to maintain his passion for learning like he previously has.

“It gives Charlie the opportunity to be in charge of his learning and where that will take him in the future,” said Jacqueline. 

Lily has represented Queensland for gymnastics, swimming, and athletics. She is also passionate about music, song writing, travel and raising awareness for hearing loss.

“I was diagnosed with profound hearing loss when I was 11 months old. My parents suspected that something was wrong because I wasn't speaking or reacting when they’d call my name,” said Lily.

Lily

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.

To get the best outcome from hearing technology, recipients are encouraged to do specialised speech therapy to learn how to listen through their cochlear implant or hearing device. Lily and her family came to Hear and Say for speech therapy as well as audiology services to program her implants and keep them up-to-date.

“Without Hear and Say my life wouldn't run the way it does now. I wouldn't have had the same opportunities that I’ve had, and I might never have known some of the people who are now in my life.”

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!”

Img Lily On Beam

Growing up, Lily also spent a lot of time at gymnastics, going to training almost every afternoon.

“Gymnastics was my second home and the people there were my second family.

“People would wonder what it was like being deaf and doing gymnastics, I found it hard to answer this because for me, I didn’t know anything else.

Lily Clapping

“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.”

Looking ahead, Lily has big dreams for what her future might hold.

“My dream is to work in the entertainment industry. I’d love to become a manager for an artist, have my own record label in Australia and build an international company.

“Another dream of mine is to become an advocate or influencer to spread awareness and educate people about being deaf.”

As Lily shares her story, she has some quick pieces of advice for new parents who have just found out their child is deaf.

“When your child grows up a bit and you’re having an argument, those hearing devices will not be staying on! We will take advantage and choose not to hear you yelling.

“In all seriousness, please be optimistic and patient, do not ever hesitate to seek help from experts, ask as many questions as you need and be prepared to learn a lot.

“The process will be challenging and emotional but one day your child will be so grateful for what you did for them. It will all be worth it.”

Bláthnaid loves playing with her kitchen and dolls, and her “babies” are very well dressed and fed! At two-years-old, Bláthnaid has many strings to her bow, she also enjoys playing on the trampoline with her brother and has a passion for music.

“She absolutely loves music, she will sing along to songs and dance whenever she hears a beat – everything from Metallica to the music on a TV ad,” said Vicki, Bláthnaid’s mum.

Blathnaid And Her Family

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.

“She was born with a condition called congenital cytomegalovirus (CMV), which she had contracted in utero. Once we had that diagnosis, there was a lot more testing to make sure the virus hadn’t caused other problems, such as lesions in her brain and enlarged organs.

“As a mum, I blamed myself and started to question whether I had done something wrong. But, that doesn’t get us anywhere and it certainly doesn’t help Bláthnaid,” said Vicki.

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.

Img Blathnaid

“We want Bláthnaid to live a happy life where her speech and language is developmentally on track with her peers, so that she can attend a mainstream school with her brother. We chose to have the cochlear implant fitted and undergo so much speech therapy so that this is a reality,” she said.

“When she is older, Bláthnaid might choose not to wear her cochlear implant and embrace the Deaf community, but we wanted to give her the options so she can choose herself.”

Newly graduated from a nursing degree, a lifelong drive has shaped 21-year-old Jessica’s professional goals.

“I have always had a huge passion for helping others, and worked in disability support and nursing for over two years while finishing off my studies,” said Jessica.

“I’ve just started a new job as a registered nurse working in complex disability care, in a residential facility with an amazing group of clients and an awesome team. It’s been great so far, and I feel blessed to be able to continue working in this area following the roles I took on while at university.”

 

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.”

 

Jess

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With many of his loved ones living interstate, not being able to hear well on the phone wasn’t an option for Brisbane grandfather, Michael Dullahide.

“My daughters and grandchildren all live in Melbourne, and so we rely on regular catch ups via the phone or FaceTime,” explained Michael.

However, an increasingly noticeable hearing loss had begun to frustratingly interfere with these cherished conversations.

“I’m now retired, but I suspect that it was long periods working in a noisy industrial environment together with getting older which have been responsible for my hearing loss,” said Michael.

“It was infuriating not to be able to participate fully in some conversations, especially with a number of people like a family event, or when trying to listen to my grandchildren.”

It was then a chat with a friend who had faced similar issues which put Michael on a path to reclaiming the sounds he’d thought may be lost forever.

“I was one day discussing the health problems associated with ageing and in particular, my hearing issues, with a friend, when I discovered she had had similar concerns. She had sought advice from Hear and Say about her hearing and was extremely happy with the outcome.”

The conversation led Michael to make an appointment at Hear and Say’s Ashgrove clinic, a decision he regarded as “life changing”.

“Now that I’ve had hearing aids fitted, tuned to my ears and have worn them in all types of conditions and environments, I too am very happy with the results,” said Michael.

“There was no stress involved in the process. It began with an informative meeting with my audiologist, including extensive testing of my hearing quality in both ears which was documented in a comprehensive report. We then talked through a recommendation regarding the type of hearing aid best suited to my needs.

“I have also been impressed by several follow-up appointments, where my audiologist carried out a range of tests and ensured my complete satisfaction with the product.”

Michael’s new hearing technology has ensured he can get back to fully enjoying his vast range of hobbies including music, golf and hiking, and of course stay connected to his loved ones regardless of distance.

“It has all been worthwhile, and I now enjoy taking part in discussions within groups of people and having much more fruitful conversations with my grandchildren.”

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We welcome our recently appointed CEO, Greg Elphinston, who started with the organisation in January.

Greg brings experience from a diverse and international career to Hear and Say. Through his work as a social innovator and instigator of the UNESCO Mobile Learning week, Greg has been influential in the creation and adoption of mobile technology for health and education in developing countries.

Greg

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.”

At Hear and Say we strive to improve the outcomes and possibilities for people with hearing loss, and to do so we turn to research.

Listening and Spoken Language Specialist, Tracey Taylor teamed up with industry experts Georgia Cambridge, Audiologist, Dr Wendy Arnott, University of Queensland Honorary Senior Research Fellow and Speech Pathologist, and Dr Wayne Wilson, Audiologist, to undertake a systematic review of the peer-reviewed literature on the efficacy of auditory training – that is, training the brain to recognise and give meaning to sounds.

Back Of Women's Head With Cochlear Implant

“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.

“By comparing and reviewing the available research, it was found that adults who already have speech and language skills before acquiring a hearing loss and receiving cochlear implants later in life, often benefit from auditory training,” said Tracey.

This systematic review specifically found that for adults with cochlear implants, listening to certain speech sounds made it easier to hear those sounds, and listening to lots of nonsense words can make it easier to hear sentences in noisy environments.

However, these findings are inconclusive and there remains a need for more research to clearly demonstrate the specific auditory training required to improve auditory outcomes and everyday listening.

“Every day, the team at Hear and Say sees first-hand the incredible results made possible thanks to hearing technology and auditory training, however there is a lack of research in this area,” said Tracey.

“By knowing more about the techniques that can best benefit each individual and their needs, we will be able to better support those impacted by hearing loss. This is an exciting field to be involved in and I can’t wait to see what the future holds.”

To learn more and read the complete paper, Auditory training for adults with cochlear implants: a systematic review, click here.

One of the core elements of what we do at Hear and Say is supporting children to hear and speak, which relies on the skills of qualified speech pathologists. We sat down with Josh McVeigh to get a better understanding of what’s involved in speech therapy and why he is so passionate about working with children with hearing loss.

“I’m pretty new at Hear and Say really, having graduated from a Bachelor of Speech Pathology late 2021. I was drawn Hear and Say because someone I knew worked here and would always praise the amazing work done for children with hearing loss,” said Josh.

Josh Mcveigh

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.”

Josh’s musical abilities aside, he has already proven to be a valued member of our team, working with audiologists to best support our families. This has turned out to be one of his favourite elements of the job…

“Being there when a cochlear implant is switched on for the first time, and the co-treatment sessions (where we undertake speech therapy in an audiology appointment) with myself and the audiologists has been an awesome experience. To be able to help children learn to listen for the first time, and see their family’s reactions is a pretty special feeling,” said Josh.

1First Voice. (2021). Public Perceptions of Deafness Market Research. [Unpublished raw data].

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From the very start Quota Clubs have generously supported Hear and Say, driven by the passion for helping those affected by hearing loss. After a recent meeting with the Quota Club of the Gold Coast, we reflected on the great outcomes we have achieved together, creating opportunities for babies and kids with hearing loss.

“Quota Gold Coast Inc has been working with those who are deaf or hard of hearing since its charter in 1954,” said Christene Pye, Honorary Secretary of Quota Gold Coast.

Following the invention of the cochlear implant, Quota began lobbying the Queensland Government to introduce hearing screening at birth for all babies.

Quota Gold Coast Club

“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.

“At one of these functions we were thrilled to have Cruz, a young man with a cochlear implant, as the guest speaker. It was such a thrill to see a young boy speak so well in front of a crowd,” said Christene.

It’s not a job-well-done just yet though, with Quota’s support for hearing screening continuing, now for older children.

“We were truly shocked find out such a large percentage of children who passed the infant screening are then found to have hearing issues by the time they reach school,” said Christene.

In fact, the instances of hearing loss doubles by the time children reach school age1 and it’s this reason our Hear to Learn – School Hearing Screening program exists - to ensure no child falls through the cracks.

Recently Quota Gold Coast made a generous $2,000 donation that can fund the hearing screening of about 80 students. It takes a village to ensure children are not limited by their hearing loss and we are certainly grateful to have Quota Gold Coast in our community.

1The Social and Economic Cost of Hearing Loss in Australia. (2017). Retrieved from HCIA website: https://www.hcia.com.au/hcia-wp/wp-content/uploads/2015/05/Social-and-Economic-Cost-of-Hearing-Health-in-Australia_June-2017.pdf

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2020-21 Annual Report

Read about the 300 babies born with hearing loss in Australia each year, and how Hear and Say continued to change lives this year.

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Spotlight on single-sided deafness

“This research project is very exciting because it helps to show that children who receive a cochlear implant for single-sided deafness saw significant improvements in their day-to-day hearing abilities, which are maintained over time."

Cycling and hearing loss: staying safe on the roads

“People kept mentioning to me that I was missing parts of conversations, and in crowded environments I was finding it very difficult to hear and engage with others."

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