A mother whose nine-year-old daughter's cochlear implant was wrongly programmed at the Women's and Children's Hospital in Adelaide says her issues with the hospital's audiology department date back years and include misdiagnoses and delayed treatments.
The compensation bill for South Australia's cochlear implant "scandal" is tipped to extend into the millions but many of the families affected just want answers.
About 30 children's cochlear implants were wrongly programmed at the hospital, causing what are expected to be lifelong development problems.
Aspasia Paspaliaris said she had "suffered in silence" for many years with her daughter, Amelia.
The now nine-year-old was diagnosed at three months old with profound hearing loss but a few months later was told it was "moderate to severe hearing loss" and hearing aids were the best option.
"As time went on, obviously nothing was happening, she was developing speech and even some sounds," Ms Paspaliaris said.
"We spoke out to Australian hearing and to the Women's and Children's Hospital, and for 18 months I battled to get them to do a HEARlab and they finally did and they said, 'Wow, she's profoundly deaf.'
"By nine months, she should have had cochlear implants.
"I was expressing myself to all of the professionals, she can't hear and no-one was listening to me."
It was not until she was aged three and a half that she had cochlear implants fitted in both ears.
"Unfortunately she didn't start hearing properly and developing speech and language until she was four, so she missed out on the crucial four years of her development," Ms Paspaliaris said.
Late last year, the family was informed Amelia's cochlear implants had been incorrectly programmed, along with those of many other children involved in the hospital's program.
She said if the mapping issues had been identified years earlier it would have had a "huge impact" on the development of Amelia's speech and language, and she would not be significantly behind her triplet sisters.
"I've never had an apology from the hospital," she said.
Ms Paspaliaris said she was now seeking a second opinion because she did not believe she could put her "full faith" in the hospital.
Independent review
The South Australian government yesterday announced an independent and external review of the hospital's cochlear implant program would be conducted after it emerged at least one in four patients in the program had been fitted with wrongly mapped implants.
The Women's and Children's Hospital has been internally investigating the problem for 10 months. It said it did not yet know the cause of the issues but would participate fully in the external review.
Audiologist Nicole Eglinton said she was "relieved and pleased" after calling for an independent investigation 12 months ago. She had notified the hospital and health regulators of problems with their cochlear implant programming after noticing the same issue in nine of her patients.
"The review should focus on the hearing healthcare pathway from diagnosis and ensure safeguards are in place at every stage for children with cochlear implants," she said.
"In my view, this is a clear example of why no single organisation should provide a service and why choice should be offered.
"In my experience as an audiologist with over 20 years experience, audiology should be a registered profession, it shouldn't be self-regulated.
"Yesterday was the first time the [affected families] had heard, 'I'm sorry.'"
'Disbelief'
Deaf Australia CEO Jen Blyth told ABC News via an Auslan interpreter that the incident "should never have happened".
"We know that [deaf babies] … need the best start in life and language is the best start in life, whether it's Auslan, English, and that then sets them up in life," she said.
"This is an example where you haven't been provided a bilingual approach because medical professionals and everyone involved in paediatric hearing haven't encouraged Auslan as a complement to English so they have a delay in all languages.
"If they learn English and Auslan at the same time, even when they have cochlear implants, it's much more successful for these children.
"I don't think they understand that learning English and Auslan at the same time does not mean that their English will be impacted, it will actually complement each other.
"I really do strongly believe that if Auslan was encouraged to accompany English, this situation could have been minimised."
Opposition Leader David Speirs said all resources should be put towards accelerating the independent review and offering compensation to the families affected.
"This is huge and it's a scandal of the highest order," he said.
"The families do deserve compensation, there's clearly been fault, it's had lifelong impacts.
"I suspect that that [compensation] would reach into the millions."
