Jessica could have a cochlear implant but decided not to. Here's why
SOURCE:ABC Australia|BY:Vanessa Vlajkovic
Cochlear implants can be a life-changing tool for people with hearing loss, but some Deaf people argue their use risks compromising their community's identity.
Jessica Cosgrove was only three years old when she had surgery to insert a cochlear implant hearing device.
The Australian Sign Language (Auslan) lecturer still remembers the shock of what happened when it was turned on a year later.
"I remember feeling confused and looking at the white soundproofing walls when the noise started," she said.
"I was so startled that I screamed to my mum, 'I'm hurt! My ear hurts!' My mum didn't understand. She just kept saying, 'No, it's all good!' But I felt really uncomfortable."
Now 37 years old, the Perth mother of one lives with a form of deafblindness known as Usher syndrome and does not regret her decision to stop using her cochlear implant a few years after it was installed.
"Deafness is not a tragedy," she said.
"It's simply a different way of experiencing the world."
What is a cochlear implant?
Cochlear implant surgery is quick and relatively simple. (ABC News: Dominic Briggs)
A cochlear implant (CI) is a device that stimulates nerves inside the ear to provide the sensation of sound to people who are profoundly deaf.
The other part is implanted under the skin behind the ear and has electrodes that thread into the cochlea in the inner ear.
Implant surgery can usually be completed in less than a day.
The Australian Institute of Health and Welfare (AIHW) said profound deafness affected approximately 10,000-12,000 adults and 1,400 children in Australia.
From this population, roughly 2,000 adults and 570 children are eligible for a cochlear implant.
Debra Swann, the chairperson of advocacy organisation Deaf Australia, said decisions on whether to install cochlear implants in young patients were fundamentally about balancing two responsibilities.
"The first being the parents' obligation to give their child access to the world around them," she said.
"The second being the child's future right to autonomy, identity and linguistic freedom.
"Deaf advocates argue that parents who choose cochlear implantation for a very young child are making a profound decision that affects not only their child's hearing but also their identity, cultural belonging and the communication path they will be expected to follow."
The Australian Deaf community's sign language, Auslan, is recognised as its own language, separate to English, with its own grammar and structural rules.
Deaf advocates argue the language ties their community together, especially given that the use of sign language in schools was once banned.
Ms Swann said many Deaf adults feared decisions to prioritise having CIs over learning Auslan could reflect the values of their hearing parents rather than the child's future preferences.
"The child cannot express whether they would prefer to grow up in Deaf culture or the hearing world," she said.
"And because implants require years of therapy and commitment, some think it is a decision that should ideally involve the child when they are old enough to understand their own needs and identity."
The medical perspective
Tim Jones is the deputy chair of the Tasmanian branch of the Royal Australian College of General Practitioners.
He said CIs were "the most effective intervention" for profound hearing loss but doctors did have an obligation to discuss other options like sign language before fitting children with CIs.
"It is absolutely a standard of care to support informed consent and shared decision-making," Dr Jones said.
"Speaking as a solo GP with a strong interest in child development, I would comment that it [the debate around consent] reflects some of the inherent gaps in our society.
"There is good evidence that children can receive assisted hearing devices like cochlear implants, and [a] strong education and learning of sign language without the two being mutually exclusive."
Helping people find 'the right solution'
Eliza Brbich says access to sound early in life can help with speech and social skills. (ABC News: Dominic Briggs)
Perth-based audiologist Eliza Brbich has worked in the industry for 16 years.
She said cochlear implants were a good option for people who were not getting enough benefit from conventional hearing aids.
But she also stressed that "it is our job to guide people to find the right solution for them", which can also include using sign language.
"In the face of difficult decisions, looking at scientific evidence is a good place to start," she said.
"We know that a lack of or insufficient access to sounds in our early years can lead to delays in speech, language, social and emotional skills.
"I don't envy parents having to decide whether to go ahead with getting a cochlear implant for their child.
"These parents are deciding a lifelong pathway for their child before their child has the ability to tell them what they want."
'I don't wish my mum had waited'
Ryan Malonda uses sign language. (Supplied: Ryan Malonda)
Thirty-year-old Ryan Malonda works on accessibility technology for the government's National Disability Insurance Agency in Melbourne.
He has no regrets about receiving a cochlear implant as a child.
"I was implanted at about 17 months old, in April 1997," he said.
"My surgery was part of an early trial of the Nucleus 24 Cochlear Implant System."
Mr Malonda said he was the youngest person in Victoria to receive a CI at the time because surgeons then did not typically perform the procedure on babies under 18 months due to the belief that their skulls were too small.
Mr Malonda's deafness is classified as bilateral profound sensorineural.
As newborn hearing tests were not commonplace at the time, his mother only discovered her son could not hear when he was between three and six months of age.
"I do not think I wish my mum had waited for me to be old enough to make that choice," he said.
"Language acquisition as early as possible is absolutely critical and delaying that would have had lifelong consequences.
"At that time there was no NDIS or nationally coordinated support system for parents of Deaf children.
"It would have been extremely difficult for my mum to find the Deaf community or ensure I could develop fluent sign language skills.
"That would have also been her third language, since English is not her first language.
"So, it would have been hard for her to access the support she needed to learn sign language herself and become fluent enough to communicate with me."
He said doctors at the time "discouraged Mum from using sign language [but] did not provide any evidence to support that advice".
"She was simply told to focus on speech and listening without being shown the full picture of what a bilingual approach could offer," he said.
'Deaf people can be powerful role models'
A faint scar behind her ear is the only external sign of Jessica's old CI. (ABC News: Keana Naughton)
Back in Perth, Jess Cosgrove has been using sign language all her life.
When she was seven years old her CI was packed into a box and never used again.
"I saw my brother one day running outside, super-excited. I asked my mum what was going on but she insisted I put my CI on and identify the sounds," she said.
"I lost my temper, grabbed her arm and screamed at her to sign to me. She eventually did, saying it was an ambulance.
"I had gotten my way, but I was exhausted."
After that, her parents succumbed to their daughter's desire to use sign language and be part of the Deaf community.
Ms Cosgrove says if she had been given the choice she would have said "no" to a CI.
For parents who may be receiving medical advice for their Deaf children she recommended talking to other Deaf people.
"Lived experience differs from medical expertise," she said.