Chloe's radio aid rescue
Use of a radio aid from when she was only three months old has really helped give Chloe (now 4) more access to sound.
Sarah and James watched their daughter run off ahead in the park but they weren’t worried. They knew Chloe’s radio aid was switched on so she’d hear Sarah call her to come back.
“It’s reassuring for us from a safety point of view. Even if she’s got quite far away I know she can hear me if I just shout ‘stop’,” says Sarah. James agrees, “It also cuts out a lot of the background noise. When we go to loud places Chloe could be freaked out by the noise but with the radio aid she can constantly hear us.”
Although Chloe failed her newborn hearing screening, Sarah and James, who also have a son, Scott (9), were told not to worry – it was probably just fluid from the birth in her ears. But she kept being called back for further tests until she was diagnosed with severe sensorineural deafness. “Even though we expected to get that diagnosis by then, it still thumps you in the stomach a bit,” remembers Sarah. James felt particularly upset. “Dads are meant to fix everything and this was something I couldn’t fix,” he says. “But you learn to live with it really quickly.”
"…she could hear us better in the car and the buggy."
The family also found out that Chloe has 9p minus syndrome, a rare genetic disorder caused by the deletion of a portion of a chromosome and they aren’t yet sure exactly what this means for her. “At the moment it’s predominantly a developmental delay; she’s eighteen months to two years behind on most things,” explains Sarah. “She also has a speech delay – but that’s complicated by her deafness – and hypermobility. There aren’t that many children affected by 9p but they’re all so different so no-one is sure if it’s linked with her deafness or not.”
When Chloe was three months old, the family’s Teacher of the Deaf gave them a radio aid. “She said Chloe might be a bit too young but to try it in the pram and see how she gets on,” remembers Sarah. “It felt a bit ridiculous because she was so tiny. We didn’t use it very much in those early days because we didn’t get much feedback but as she got older and was sitting up we used it more and definitely noticed she could hear us better in the car and the buggy.”
At nine months old, more in depth tests revealed Chloe actually had a mixed hearing loss, but mostly conductive, and she was given a bone conduction hearing aid to replace her behind the ear hearing aids. This meant her radio aid was no longer compatible and she was left without one for a time. “That was OK. Chloe’s hearing levels with hearing aids had increased a bit anyway as she now had the correct type of aids for her hearing loss,” remembers Sarah. “We signed more when out and about and we got used to not having it but when we were offered the opportunity to switch devices to go back to having one; we couldn’t do it quickly enough – especially as, at eighteen months, Chloe was finally crawling and would be starting nursery. That was when we started to need it more.”
"Once you start using it properly the benefits are so obvious."
The Teacher of the Deaf asked Sarah if she wanted to take part in a study the Ear Foundation was doing on the impact of radio aids in the early years. “It was explained to us that part of the research would be to show that having a radio aid does benefit children at home and not just at school,” Sarah says. “We wanted to be involved because Chloe hadn’t had one for so long and we knew families in the next county were struggling to get them at all.”
Over the next eight months the family made recordings of their interactions with Chloe, both with and without using the radio aid, so the study could compare her responses and conversations. “The results were really interesting. They showed that she definitely does more conversational turn-taking with the radio aid. Back then she didn’t have many words, but her babbling and attention levels were definitely more when we were using it and she could hear us more clearly. We went out for a meal for James’s birthday; although there were 14 of us the recording showed that with the radio aid Chloe could hear and still felt part of it even though it was a noisy situation with lots of people,” says Sarah. “The results also showed how much more she responded to talking we do in the car.”
The radio aid also increases Chloe’s confidence and independence. “At soft play or a friend’s birthday party she’ll go off and do things on her own that I think she’d be reluctant to without it, especially with her other issues. She’s reassured because she knows she can still hear us and once she’s looking at us we can use sign,” explains Sarah. “It’s like a security blanket for her.”
Sarah and James recommend use of a radio aid as early as possible. “Because we got it so early it became second nature to us. If we’d got it later it may have taken longer to get in the habit of using it,” says Sarah. “There are so many situations where we’d be really lost without it now. Once you start using it properly the benefits are so obvious.”