Cochlear implants: They are not a‘one size fits all’solution

Three years ago Bianca Birdsey’s twin daughters were nearing their third birthday. But anxiety overshadowed the celebration’s excitement: both Grace and Faith were not talking like other children their age.

Despite being a doctor herself and visiting five different medical professionals Bianca did not know what was wrong.

“I was consistently told my kids were totally normal and my husband I were being paranoid,” she says. Bianca refused to give up and days later Grace’s hearing test results validated her fears – her first twin was deaf. She tested Faith immediately afterwards: she also had severe hearing loss.

The young mother from KwaZuluNatal has no deaf family members and wondered how she would bring up her two partially deaf daughters “in the best way possible” when she “knew so little about how to actually do this”.

But a pamphlet she received from a local school for the deaf about Hi Hopes, a home-based support organisation for families in her position, turned her life around.

The programme is based at the University of Witwatersrand’s Centre for Deaf Studies but also operates in KwaZulu-Natal, the Western Cape, Gauteng and Limpopo.

In February, Bianca’s oldest twin Grace received a cochlear implant after asking for one when her hearing aids stopped working well.

“The decision to get the implant was hard enough to make on its own but I was shocked when other people questioned our choice.”

She has even received “horrific” text messages about cochlear implants exploding in a child’s head. “But these are extremists – a few people who believe these assistive devices go against deaf culture by trying to fix a problem when deafness doesn’t need to be seen as a disability.”

Hi Hopes director Claudine Storbeck says this type of situation is common.

“Many don’t know this but the deaf world can be very controversial. People can support different sides from cochlear implants versus hearing aids to what kinds of communication a deaf family chooses to use,” she says.

For Bianca this has taught her “to treat each kid like an individual”. “Every kid is different and needs to be treated as such. For us, Grace wanted the implant and Faith is happy to continue with her hearing aids — and that’s what works for us.”

Bianca and her husband have learned sign language which they use along with speech to communicate with their daughters. She says this gives them the chance to choose what works for them, just like Grace choosing a cochlear implant.

Storbeck explains that a cochlear implant is an electronic device surgically placed under the skin behind the ear. The device gives a “profoundly deaf” person a sense of sound by bypassing the damaged cochlea, which is the part of the inner ear responsible for hearing, and sending these sound signals electronically to the brain.

The implant can help such a person to perceive environmental sounds and communicate with oral speech.

Storbeck says the implant is intended only for “severely impaired” hearing.

A 2012 report in the South African Journal of Communication Disorders estimated the cost of a cochlear implant over the 10 years a child is treated is about half a million rands.

This includes the initial surgery and device but also batteries (R2 550 a year), rehabilitation to teach a child to hear with the device (R7 200 a year), repairs (R3 000) and insurance costs (R4 040).

According to Storbeck, most parents in the Hi Hopes programme come from poor backgrounds and can’t afford the device.

“The government does provide a handful of implants to kids in the public sector but it’s very few and far between,” she says.

Bianca, with the support of her medical aid and family, was “lucky enough” to be able to get Grace an implant in the private sector earlier this year.

Storbeck says that, with “cochlear implants, the rule is the younger the better. We like to get a child used to using it from as young an age as possible.

“Depending on a baby’s health the implant can be surgically inserted from as young as 10 months but recent advancements have put the initiation age at even younger,” she says.

In January this year, a family in Cape Town’s Hout Bay received a cochlear implant for their threeand-half-month-old baby, one of the earliest surgeries of this kind in the world.

The child was diagnosed with severe hearing impairment just days after she was born, which, according to Storbeck, is a “rarity in South Africa”, where the average age of identification is two years and four months.

“Looking back we would have obviously screened all of our daughters at birth because every day wasted can impact on a child’s development.”

She says despite the fact that her twins were diagnosed late, at almost three years of age when a “huge amount” of language should have already been developed, they are coping well in Grade 1 at a school for the deaf.

Bianca has since started a parent support group called Thrive to help other families with deaf babies. “Over 90% of deaf babies are born to parents who have never even met a deaf person in their lives before – these groups help with all the difficult emotions families almost always go through.”

Storbeck says many families are traumatised by the news that their child can’t hear.

“But friendly support and accurate information is often all they need to turn their emotions around,” she says.

For Bianca and her children, Storbeck’s statement rings true.

“The more I learn about what it means to be deaf and that solutions are often there for every problem, I feel more and more calm. I am comfortable that Grace’s implant and Faith’s hearing aid are right for them.” —