Deciding against technology for Olivia

When Olivia’s parents found out she was born without cochleas, they did their own research to help them decide whether they wanted her to use technology or a sign-only approach.

With no history of deafness in their family, Olivia’s parents were shocked when they found out she was profoundly deaf. “We didn’t know what we were dealing with. We’d never met a deaf person before and didn’t know what a deaf person’s world looked like,” dad Scott remembers.

However, nothing could stop them from enjoying being new parents. “We hoped we’d have a lovely baby, and that’s exactly what we got,” says mum Yasmin. “She’s the most amazing little girl.”

Due to her level of deafness, one-year-old Olivia’s audiologists recommended she be assessed for cochlear implants. “When she was eight weeks old, they started talking about cochlear implants and told us they would be her only chance of having a ‘normal’ life,” says Yasmin. “It was all new to us, so we put our trust in the professionals.”

While Yasmin and Scott waited for Olivia’s cochlear implant assessment date, they decided to learn more about what it meant to be deaf. “Yasmin came across a deaf club nearby which has people of all ages, some with hearing aids and cochlear implants and some with no technology at all,” says Scott. “Getting to meet a vast range of deaf people in one place, we started to understand they embraced their deaf identities and didn’t allow deafness to hold them back.”

With a more positive outlook for Olivia’s future, Yasmin and Scott were also inspired to start teaching her British Sign Language (BSL). “We started to do our own research, and we knew BSL would be a great language for her to have regardless of whether she’d have hearing technology,” says Yasmin.

However, they were disappointed by the lack of information about BSL and the lack of financial support for learning it. “None of the professionals mentioned sign language during any of our appointments,” says Yasmin. “We had to bring it up time and time again. They went down the ‘we’re going to fix this’ route, treating Olivia’s hearing loss as the problem, rather than the way we were communicating with her.

“We’ve had to fund our own sign language classes without any support from the local authority, and that’s been the biggest let-down. I think every parent of a child who’s deaf, no matter how mild or profound, should have support for sign language from the second they’re diagnosed.”

When Olivia had her cochlear implant assessment at nearly a year old, an MRI scan revealed that she didn’t have cochleas. This meant she couldn’t have cochlear implants.

As a next step, Olivia’s audiologists referred her for an auditory brainstem implant (ABI). An ABI works similarly to a cochlear implant but is surgically implanted directly onto the brainstem, bypassing the cochlea and auditory nerve.

“The day we found out Olivia wasn’t a candidate for cochlear implants, they told us we had two options: the first was an ABI and the second was sign language,” Yasmin says. “Even at that point, sign language was never presented as the first option.”

Yasmin and Scott faced a big decision and they started by finding out more from other parents. “I joined a Facebook group called ‘Children with Auditory Brainstem Implants’ and got in contact with some parents with different experiences,” explains Yasmin.

They also spoke with professionals. “They told us there was no guarantee the ABI would work for Olivia, and that while it might give her access to environmental sounds, anything above that would be a bonus,” recalls Yasmin. “They were all supportive of cochlear implants, but they didn’t want to comment on the ABI because it’s such a specialist area.”

Speaking to family and friends helped Yasmin and Scott work through their own feelings. “When you mention brain surgery to anybody, they squirm,” Scott says. “Taking Olivia into hospital to get the MRI scan was quite tough for us, so we could only imagine what an operation would be like. You’re talking about touching the brain, which we found very scary. We asked ourselves, why are we trying to fix her? There’s nothing wrong with her.”

“You want to try and do the best for your child,” adds Yasmin. “I completely understand any parent’s decision to get an ABI, because it’s heartbreaking to think she’ll never be able to hear our voices, but we decided we’re not willing to put her through invasive brain surgery.

“It’s important to not go down the rabbit hole of the barriers she will face and instead focus on all of the amazing things she will do. She’ll communicate using a rich and beautiful language, and she’ll belong to a community of people who accept and support her.”

Now that Yasmin and Scott have decided to use BSL as Olivia’s main method of communication, they feel fortunate they started signing with her early. “I can’t imagine how lost I’d have felt now if we’d waited to see if she’d have access to speech and spoken language,” says Yasmin. “We’re very lucky that we started signing to Olivia from when she was three months old, because now her communication is coming on really well. She’s able to express herself and she’s learning just the same as any other child.”

Although they’ve made their decision, Yasmin and Scott still plan to find out more about the ABI. “We’ll have the conversation with the doctors so that when Olivia’s older, we can give her the full information if she wants it,” says Yasmin.

“We do sometimes worry about decisions we’ve made, but no matter how big or small the decision, we always have Olivia’s best interests at heart. For other parents facing big decisions, I’d say go and do your own research, and speak up if something doesn’t suit you. Olivia’s an extraordinary little girl who just happens to be deaf. Our expectations for her are as high as ever.”

Spring 2023 Families magazine