Where it all began
In June 2014, Sarah and Anthony welcomed their first born to the world at Melbourne’s Jessie McPherson Private Hospital – their son Sam. After his birth, Sam’s hearing was screened through the Victorian Infant Hearing Screening Program (VIHSP) which detected a potential hearing loss. Six weeks later this was confirmed – Sam had bilateral permanent sensorineural hearing loss.
Understandably, Sarah and Anthony were shocked and didn’t know what hearing loss meant for their son’s future, as their family had not previously experienced hearing loss.
At two-weeks-old, Sam received his first hearing aid and eight months on from that, a second. At two-years-old, further hearing tests revealed Sam had a diagnosis of Pendred Syndrome, a genetic disorder which caused his hearing loss. Although Pendred Syndrome wasn’t identified earlier, it provided Sarah and Anthony clarity and relief around the cause of Sam’s hearing loss.
The earlier the intervention, the better
Amongst other professionals, a search led Sarah to RIDBC (through the Early Education Program – EEP) who started supporting Sam from his first weeks of his life, still supporting him today.
RIDBC supported Sam with a combination of individual and group early intervention therapy which gave him the best start in life, teaching him how to listen and speak.
Mum remembers the quality of support received from the RIDBC team, including from therapist Bronwyn Skafte.
“Bronwyn is a very highly skilled and experienced speech therapist and program manager. She is very dedicated and passionate about her job and works tirelessly to help children with hearing loss from EEP and Taralye strive to reach their full potential.” Sarah said.
“She has played many roles over the past six years, from providing our son intense speech therapy early on, right through to giving us advice regarding supports, NDIS and school. Bronwyn has been instrumental in helping to shape who our son is today, and we are forever grateful to her for that.”
Equally, Bronwyn recalls supporting Sam, and his family.
“Sarah and Anthony have been incredibly dedicated since day one, seeking out information from a variety of professionals to help them understand Sam’s hearing needs and his hearing equipment.
They wanted to ensure that best practice early intervention was always in place – with all his carers and educators and in all environments. Thus, strategies to ensure Sam had optimal listening for learning could be incorporated into daily routines and play, to help Sam meet his potential!
As a result of this hard work, Sam has been able to learn to listen and speak according to his age. Not only is he a confident and outgoing boy now but he also has a bright future,” Bronwyn said.
A network of support
In addition to the direct support, Sarah was comforted by the environment created through RIDBC group sessions. “Groups were a great opportunity to speak with other families who were going through the same journey, get advice when needed and be a support for others,” she said.
“We keep in contact with many of the families to this day, which is great to know that support is always there.”
It also provides the basis for Sarah’s advice for other families starting their journey with hearing loss.
“My advice is to speak to as many people as you can and get as much information as you need. Don’t rush your decisions and give them careful thought. There’s lots of support out there for you to access.” Sarah said.
Hearing devices give Sam the best access to sound
As well as the support from RIDBC, Sarah notes that hearing devices have played a significant role in Sam’s development.
Sam wore wearing hearing aids until he was 2-years-old, however, the diagnosis of Pendred Syndrome meant the level of Sam’s hearing loss could significantly deteriorate over time. As well, Sam’s hearing loss in his left ear was now severe to profound.
A hearing aid was not enough.
This helped Sarah and Anthony to make the decision to proceed with a cochlear implant for Sam. Since then, Sam has accessed sound bi-modally – that is, a hearing aid in one ear and a cochlear implant in the other.
Attending a mainstream primary school
Earlier this year, Sarah and Anthony sent Sam off for his first day at primary school. He attends a mainstream state school in Melbourne, receiving additional support as required. Although Sam is the only child at the school with hearing loss, he has integrated well and is educating his friends in the playground about the devices that help him to hear.
“He’s developed into a self-sufficient, independent young boy,” Sarah said, “He knows to speak up for himself if he needs to, to charge his devices and ask for help”.
“And that is in part due to the wonderful support he received from Bronwyn and her staff at RIDBC,” she said.
Well on his way
Today, RIDBC continues to support Sam with speech therapy sessions, and Sarah knows that the RIDBC team are only a phone call away. With the COVID-19 pandemic, sessions have been delivered remotely, via telepractice. But that hasn’t seemed to matter to Sam, who continues to achieve his goals.
Now six-years-old, Sam plays an even bigger family role as big brother to sister Madeleine (3 years) and baby brother Jack (8 months). And he’s as active as they come – kicking balls, running around, and keeping Mum and Dad on their toes.
If you ask him today, Sam will tell you when’s he’s older he wants to do something to help others, but “maybe not a doctor because I can’t handle vomit!” He may not become a doctor but thanks to some strong foundations from RIDBC he can achieve anything.
Find out more information about early intervention services in Victoria for children who are deaf or hard of hearing.
This news article was created prior to 22 March 2021 when NextSense was Royal Institute for Deaf and Blind Children (RIDBC).