Thursday, October 5, 2023

Local children left in silence

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Fin HansenYorke Peninsula Country Times

Five Yorke Peninsula families have been caught up in a review of the Women’s and Children’s Hospital Network (Adelaide) cochlear implant program.

The independent review was commissioned by the state government in March after an internal audit found 30 of 117 children in the program had experienced potential implant mapping issues.

Kadina mother Tina Costello said she found out her son Ryder had implant mapping issues at the beginning of 2022.

“He (Ryder) had the implant done in 2020 when he was 2 — he wasn’t able to hear at all from then until December last year,” Ms Costello said.

“We fought for 10 months to have an appointment with the ENT — they cancelled on us at least five times since the issues began.

“It (the period) affected him heaps and he wasn’t even able to call his sister’s name.

“So much of his life has been taken away which is time we can’t get back.

“We’re now hoping all the extra work we’re doing with the speech pathologist, occupational therapist and other work at home will help him get up to speed.”

Principal consultant Amanda Singleton has been selected to lead the review, along with three Victorian based clinical experts, to understand how the mapping issues occurred.

The review is set to look at the systems in place at the time, the notification and disclosure process following the error, the system changes which have been and could be implemented to stop the issue happening again, and opportunities for clinical governance or reform.

WCHN CEO Lindsey Gough said she welcomed the review into the cochlear implant program.

“We will support the review team in any capacity required,” Ms Gough said.

“It’s important to our health network and all of our staff that this does not occur again in the future.”

SA Health CEO Robyn Lawrence said it was important to learn exactly how and why the issue had occurred.

“It’s important the families affected have their voices heard and the opportunity to contribute to this review,” she said.

If your child is under 18 and has been a part of this program, and you have not been contacted, call 0481 483 586.

Locals caught in implant review

Moonta 5-year-old Mackenzie Shoumack was born profoundly deaf and received a cochlear implant at 13 months old.

Mackenzie’s mother Madi Turner said she thought her daughter had reached optimal hearing after a few months of the implant.

“We thought her (Mackenzie’s) hearing was at full potential until we picked up a few signs down the track,” Ms Turner said.

“There were a few sounds she wasn’t responding to, so a speech pathologist put us onto an audiologist from the Women’s and Children’s.

“But we never heard from them despite many attempts to book in, it was two years before she was seen by the ENT (ear, nose and throat specialist).

“Even after we got a letter in the mail to say some implants weren’t programmed properly, nobody bothered to check on her.”

Mackenzie is also autistic, which Ms Turner said had made it even harder for her daughter to communicate.

“Learning now is a lot harder for her because there was a two-year window when she wasn’t hearing to her full potential,” Ms Turner said.

“This could have a serious impact on her future.

“She shouldn’t have to pay for the negligence of the hospital.

“It’s just devastating knowing the effort I put in to get her to every appointment (prior to the implant).

“A ‘sorry’ won’t fix what’s happened to my daughter… I hope the people responsible understand how these kids have been affected.”

Local expert weighs in

Department for Education student support and inclusion senior educator Ben McNicholl said cochlear implants were aimed to provide a sense of sound to a person who is profoundly deaf or severely hard of hearing.

“The implant consists of an external portion which sits behind the ear and a second portion that is surgically placed under the skin,” Mr McNicholl said.

“Cochlear implants bypass damaged portions of the ear and use a series of electrodes to directly stimulate the auditory nerve.

“Signals generated by the implant are sent by way of the auditory nerve to the brain, which recognises the signals as sound.

“Hearing through a cochlear implant is different from normal hearing and takes time to learn or relearn, however it is hoped cochlear implants give the individual an opportunity to hear spoken language and environmental sounds throughout their life.”

Mr McNicholl said it was impossible to rewind the clock.

“I hope our system puts in place safety nets, including perhaps regular independent reviews, or provides additional audiology and administrative staffing along with expert guidance for staff to ensure there is no repeat,” he said.

“The government’s Early Intervention Services need to be bolstered — such as additional staffing via formalised early intervention service, a teacher of the deaf and hard of hearing, early interventionist (EI) deaf/hard of hearing — to support these families post implantation.

“Currently, this largely sits with NDIS (National Disability Insurance Scheme), however there are no skilled providers.

“The post-implant intervention service should sit with the government because the government screens for hearing loss at birth — why screen if we can’t intervene?

“There then needs to be a stronger link between early intervention providers and audiology; for example, requirements for audiology to involve EI providers in decisions made, assessment, review, and planning — currently, this is not mandated.”

Yorke Peninsula Country Times 4 July 2023

This article appeared in the Yorke Peninsula Country Times, 4 July 2023.


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