Wednesday, 22 September 2021

Deaf teenager chooses surgery to end isolation

LIBBY WELSH appears to be like any other teenager. She goes to school and she loves music, film and drama

LIBBY WELSH appears to be like any other teenager. She goes to school and she loves music, film and drama and using social networking websites.

But what sets the 14-year-old apart from other people of her age is that she is almost totally deaf. She can’t follow a film at the cinema or talk to her pals on the phone and finds it difficult to make friends anyway.

That’s why Libby chose to have an operation last month to have an electronic hearing device implanted in her head. It was a big decision, born out of her feelings of frustration at not being able to do the things she wants and isolation caused by her communication problems.

She says: “I want to be a normal teenager but ever since I became deaf I haven’t had a proper childhood.”

Her parents, Alex and Hilary, from Sonning Common, supported her decision to have surgery but insisted it should be Libby’s choice.

If the operation proves to be a success — and it is still early days — she will finally be able to hear better than she can remember.

Libby was only four when her problem was spotted by teachers at Sonning Common Primary School who were bemused by some of her answers to their questions.

Speaking to the Henley Standard before her operation, Libby recalled: “I would sit down in front of the teacher like everyone else and pretend to be listening and understanding what she was saying.

“If I was asked a question I would just say what was at the top of my mind. Afterwards I would sit with everyone else and watch what they were doing and copy them. It was a way of coping.”

She was taken to the Royal Berkshire Hospital in Reading, where she was diagnosed with a moderate hearing impairment and was fitted with a hearing aid the same day.

But as she began to grow up and moved on to Chiltern Edge secondary school, Libby’s hearing worsened and she became increasingly frustrated at the restrictions placed on her by her disability.

She said: “Being deaf is harder than people think as there’s a lot of misunderstanding. For example, in school everyone is really noisy and because I wear a hearing aid everything seems disorientated. It’s horrible.”

She has help from a teaching assistant and all her teachers are trained in helping her but there are more challenges outside school. If she goes to the theatre, she can’t follow what’s being said on stage because the actors are too far away.

Libby, who is an aspiring actress herself, said: “I’m not very good at comprehending speech so I will hear something but I can’t make out what that person is saying. It’s like having two massive pillows put in front of my ears — everything is muffled and disorientated.”

If she goes to a cinema she has to ask for the loop system to be turned on but she says this makes the sound so loud that it becomes intolerable.

“Cinemas seem to only put on films with subtitles either early in the morning or late at night or on a day when people can’t get there,” says Libby. “The only films you can see are ones you don’t really want to see or are out of date.”

The problem has led to social exclusion. Libby, who has two brothers and a sister who are older than her, said: “My friends will say, ‘do you want to go to the cinema?’ and I have to refuse because it would be boring for me.

“They go ice skating and bowling but it’s so noisy with the background music so I can’t go and when I couldn’t go with them they decided I wasn’t their friend anymore.

“I’ve got no real friends at school or other places apart from my deaf friends and because of that I have begun to feel lonely and unloved.”

Most other teenagers like to go shopping for clothes and chatting on their mobile phones but both of these are impossible for Libby.

She has never been able to have a phone conversation and the volume of music played in most shops makes it uncomfortable for her.

She says: “I can’t hear my own voice because he music is so loud. I would have to wear a sign saying ‘sorry I’m deaf’ so the staff would just apologise and walk away.” Another restriction is not being able to wear her hair up, which would improve her hearing, because people would stare at her hearing aid.

Libby said she had experienced some bullying and she suffered from anxiety and depression until very recently.

Life at school is still difficult because of the noise problem and having to concentrate on lip-reading, which is tiring.

“By the time I get home I’m just completely exhausted,” said Libby. “As the term goes on, the time I can listen and stay alert becomes shorter and shorter. At the end of the year I can do one lesson and then nothing else because I’m too burned out.”

Libby has kept her spirits up by acting and dancing, which she says is a form of escape. She is a member of Stagecoach, based at Valley Road School in Henley, and performed at the Dorchester Festival in Oliver! and played the mother of Augustus Gloop in a production of Charlie and the Chocolate Factory.

Libby said: “These are things I can do where I’m not judged like I am with everything else. When I’m dancing, I can’t hear the music but I can feel the vibrations. I can make a real in-depth routine and everyone is amazed.

“In drama, I can read from a script and study it so I know what someone is supposed to be saying and what I’m supposed to say next. I don’t get nervous because when I’m on stage acting or dancing I get all this adrenaline. It’s the only time I enjoy myself.”

Her mother, a trainee psychotherapist, says: “Acting really does give Libby something. She’s in her element and it enables her to connect with people. It shows that things are possible and can be achieved if the right access is in place.

“There’s a lack of understanding with deaf people. People will accentuate their lip pattern or shout but it becomes too intense and embarrassing for the deaf person.

“However, she has got some friends who have been great and stuck by her for a very long time.” Libby’s father, who works in human resources for Vodafone, said: “The effort it takes her to follow a conversation is huge and it has had a significant impact on her self-confidence.

“It takes considerable courage to approach someone and try to have a conversation or to join in with a group of people at school or any other social setting — something which she never had any problem with when she was younger and had better hearing.

“She now finds it easier to form friendships online, where the communication is through text and other forms of prepared media.”

Mr Welsh said Libby did not want the bilateral cochlea implant operation until last Christmas when she changed her mind due to her growing feeling of isolation.

He said: “We have always supported Libby but also respected her wishes as we felt unable to make decisions for her about her own body. It had to be her decision. This operation won’t cure her but it will enhance her hearing. It has the potential to allow her to join in and be herself again.”

Libby had the operation at the John Radcliffe Hospital on August 19.

The evening before, she was accompanied by her friend Ellen Arthur, 16, a fellow member of the Oxfordshire Deaf Children Society, who has had the same operation.

Mr Welsh said: “Ellen was able to support Libby — and us — in a way no one else could.”

The surgery, which involved drilling into her skull, lasted about six hours. The implant has 48 electronic sensors, which will perform the same job as the tens of thousands of tiny hairs inside the cochlea of a normal ear, picking up a full range of sound frequencies.

Dr James Ramsden, the surgeon, told the family he received a strong signal from the implant after testing Libby’s auditory nerve during the operation.

He “switched on” the implant on Wednesday last week. The volume will be turned up gradually and Libby will attend speech therapy classes to learn different sounds.

Before having the operation, Libby said she felt it was her “only hope”.

She said: “My hearing is getting worse every day. If I stay like this in two or three years’ time I would be completely deaf.

“Hopefully, when I get the implants I will be able to talk to someone on the phone and know what people are saying straight away. Something like that is just unimaginable to me. It’s amazing just to be able to think about it.”

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