Jack’s Story - Royal Institute for Deaf & Blind Children

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Jack’s Story

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Jack our cochlear implant recipient

When Jack was born with bilateral deafness, mum and dad didn’t hesitate for their son to receive bilateral cochlear implants. Five years earlier their daughter Charlie was also born with hearing loss. Today, three-and-a-half-year-old Jack is thriving with listening and spoken language thanks to support from RIDBC.

Experiencing hearing loss for the first time

In July 2012 when Ros and Grant welcomed their daughter Charlie into the world. Charlie’s newborn hearing screening (SWISH) indicated she was profoundly deaf bilaterally (in both ears). The news sparked a flurry of appointments for the family – to confirm the diagnosis, and address how best to support Charlie in her first months of life. Initially, Charlie was fitted with hearing aids.

Charlie was born at Gosford Private Hospital, north of Sydney, but was formally diagnosed at Newcastle’s John Hunter Hospital. It was there a social worker recommended that Ros and Grant connect with RIDBC, to receive crucial early intervention therapy for Charlie. Soon after, it was determined that hearing aids would not be enough and, after extensive research, the family decided to proceed with cochlear implants.

RIDBC then supported Charlie when she received her first cochlear implant at 7-months-old, and second at 10-months-old.

Charlie with her mum Charlie our cochlear implant recipient

Benefiting from lived experience

Five years after Charlie was born, Ros and Grant returned to Gosford Private Hospital for the birth of their boy Jack. Just like his sister Charlie, Jack’s newborn hearing screening indicated that he too was profoundly deaf in both ears.

“As soon as we received the results [of the SWISH screening] we knew. There was a realisation of what we were being told and the next steps we needed to take,” said Ros.

Importantly, Ros and Grant knew what they needed to do.

“One thing we immediately decided was that we wanted Jack to receive bilateral implants at the first opportunity. With Charlie we went through two surgeries, but it was more than that – it was the preparation for surgery, the recovery time. We didn’t want to prolong that for Jack,” Ros said.

After their experience from years earlier, Ros and Grant chose for Jack to receive his cochlear implants younger, at 5-months-old.

Jack received bilateral cochlear implants from one of the world’s most experienced cochlear implant surgeons, Clinical Professor Catherine Birman, who is also the Medical Director of RIDBC’s cochlear implant program.

Jack's familyHow RIDBC has offered family support

As with Charlie, RIDBC began supporting Jack in his early months of life. And they have been supporting him ever since.

RIDBC built a team of support around Jack consisting of his key worker and Teacher of the Deaf (TOD) Helen, Audiologist Samantha, and Speech Pathologist Jo.

“I have been supporting Jack for nearly two years. Having supported Charlie many years ago I knew the family, so I was delighted to be able to support them again,” Helen said.

Jack has regular fortnightly sessions with Helen, which were online via telepractice, for a period of time due to the COVID-19 pandemic.

But that didn’t impact his progress. In fact, Helen says he’s flourishing.

She has also observed Jack in his community preschool setting of up to 30 children, assessing and developing his social skills.

When his cochlear implant sound processor needs mapping, Jack is supported by Samantha. This is to ensure his access to sound is optimised, with minor adjustments as his hearing develops.

Speech pathologist Jo tracks Jack’s progress through regular speech and language assessments.

Helen’s role as key worker not only brings together the people that support Jack at RIDBC but ensures they work as a team, so that the family receives a consistent service.

For Ros, it is the peace of mind and holistic service offering she appreciates most.

“The team at RIDBC have been part of our lives for eight years and know Charlie and Jack so well,” she says. “They liaise with their schools and other professionals which is important for us.”

Jack’s achieving his goals

Having celebrated his third birthday a few months ago, Jack is excelling in listening and spoken language.

“His language skills are fantastic and his development in spoken language is on par with other children his age, inclusive of hearing children,” said Helen.

Ros hopes Jack will attend mainstream school, but that’s a few years away. For now, she’s just happy to see her cheeky boy going so well.

In terms of his relationship with Charlie, Ros says it is like any other sibling relationship. But deep down she knows he looks up to his big sister.

“Charlie is great with Jack; she reads to him and helps him with his sounds. She’s the perfect role model. They communicate with each other which is mutually beneficial,” Ros said.

Jack with Charlie

Ros’ message to other parents

To the parents that have recently been told their child is deaf or hard of hearing, Ros has a clear message.

“I wish I was told that there are options available at the time of Charlie’s diagnosis, because there are always options to consider. My message is to explore them,” she said.

“A diagnosis of deafness is not the devastating news that it once was. There is plenty of support available and it doesn’t impact what children can achieve.”

With experience raising two children with hearing loss, Ros is committed to helping other parents beginning the journey she started back in 2012.

And if the journey is to be anything like the one Ros has been on with Charlie and Jack, it’s bound to be one to cherish.


RIDBC is committed to supporting babies and children who are deaf or hard of hearing, and their families. The Early Intervention services available at RIDBC offer families holistic care by building a team around the child to support them with a tailored and individualised plan.

 

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