User story - Reuben

Meet Reuben

“It’s easier to talk to my friends, and I can understand the teachers better now.”

Upon meeting Reuben, you would never know that he had single-sided deafness (SSD). Chatty and full of fun, this nine-year-old seems no different from other children his age as he talks about school, friends and his new bone anchored hearing solution.

Refusing to compromise

Since losing his hearing in one ear following meningitis at age two, it has been a difficult path towards finding the right solution for his hearing problem. However, thanks to the tenacity of his mother Louise, who refused to accept that Reuben should make do with the hearing aids that he was offered, he finally got a bone anchored hearing system fitted. 

Louise explains the difference the new solution has made. “It’s been really amazing to see how he can now follow everything at school. The volume of his speech has lowered considerably, and he can concentrate more on learning as he is no longer concentrating on just listening.” 

After the meningitis, Louise quickly realised that Reuben’s hearing had been affected. “I knew that he could hear me, but he didn’t know where I was. He would often try to find me in another part of the house.” 

After this, Louise tried different solutions in order to find something that worked for Reuben. Nothing really seemed to help much.

Hearing problems and hearing aid problems

When Reuben started school, he used a hearing aid for single-sided deafness. Even though the device was small, as he was a child it was still big for him. “He didn’t like wearing it and it often fell off. He regularly had ear infections, and it was a battle every morning to get him to wear it,” says Louise. 

Louise refused to accept that this was the only option available for Reuben, and she began to research other solutions online. She came across the concept of bone anchored hearing systems, as well as the results they achieved for patients with single-sided deafness. 

“I found lots of information about bone anchored hearing systems for single-sided deafness in adults, but not much about its use in children. I couldn’t understand; why should it be any different for them? Children face the same challenges with localisation of sound and noisy environments, just like adults.” 

Their consultant had said that Reuben was not a suitable candidate for a bone anchored hearing system, but Louise insisted on a referral for a second opinion at another hospital. Her tenacity paid off at Birmingham Children’s Hospital, where the hearing consultants considered Reuben to be an ideal candidate.


Trying out the soft band

Reuben started out wearing a sound processor on a soft band to test how it worked in everyday situations. This allowed him and the family to experience this hearing solution without having any surgery. After six months, Reuben and his family knew it was the right choice, and in July 2014, he had the first of two surgeries to have the permanent solution. 

The first surgery embedded a small titanium implant in the bone behind the ear, while the second, minor surgery attached the abutment. A week after the second surgery in October 2014, the sound processor itself was fitted to the abutment. 

“The procedure itself is fairly small, but it sounds serious because you are talking about the skull. Within 24 hours after the first surgery, he did not need any pain relief, and the following day we were in the park and he was playing around on the zip wires,” Louise says.

A new universe of sounds

As soon as the sound processor was fitted, Reuben started hearing sounds in a new way. “I just thought, ‘Wow – I can hear the sound of my jeans ruffling on the chair on my right side,’” he remembers. 

His sound processor has made school life much easier for Reuben because he is now able to fully understand and interact with his surroundings. “It’s easier to talk to my friends, and I understand the teachers better now,” he says.


A real aid

Louise is just as pleased with the new device as Reuben. “I no longer have to remind him to wear his sound processor. He can see that it benefits him, and that’s been the biggest difference. Even at the noisy after-school club, he will wear the new sound processor. In the past, that was when he would take his hearing aid off.” 

Another change that Louise has noticed since Reuben has had the system is in his energy levels. “He suffers less fatigue and is now more able to handle his emotions when he is tired,” she says. 

Compared with his old soft band, Reuben likes the fact that his new hearing device is more discreet. Moreover, it is lightweight, which means he does not feel that he is wearing it. Even though it is less noticeable than the soft band solution, he still gets some comments from his classmates. “The other kids are curious, but I just tell them what it is and then it’s fine.”


Living with a sound processor

Louise cleans the abutment site with a soft toothbrush every evening before Reuben goes to bed, and Reuben puts the sound processor on himself in the mornings. “I wait until after I am dressed so it doesn’t fall off. In the beginning my mum put it on for me, but I learned to do it for myself so I can do it at school. My mum can’t put it on as well as I can,” he says proudly. 

For other parents in a similar situation, Louise has the following advice: “Talk to people with experience and find out more. Before the surgery, I was wondering whether I was putting him through it unnecessarily. However, I knew Reuben deserved more. Looking back on it now, I am thinking ‘why would you not do it?’” 

Reuben is more concise in his advice: “Get the Ponto!” He says.