New deafness therapy that changed Katie's life
Abbie and Martin McKenna, from Newtownabbey, were shocked to be told their daughter couldn't hear, but a new therapy is proving so effective they want it made available to everyone in Northern Ireland
When Newtownabbey couple Abbie and Martin McKenna welcomed a new daughter into the world three years ago, they couldn't have been happier. The addition of a baby girl to their family of two young boys was the icing on the cake.
The birth of little Katie was textbook and Abbie was able to take her daughter home just eight hours later.
However, at a hospital check-up one week later, Katie failed the routine hearing test given to all newborns.
Three days later, she underwent full audiological testing, after which, Abbie (36) and Martin (43) were told that their little girl had a moderate hearing loss and would require hearing aids.
"We'd no idea what 'moderate hearing loss' meant," recalls Abbie. "The news was a huge shock. There is no history of deafness in either of our families, but 95% of deaf children are born to hearing families.
"Although I was in tears, I spent a lot of time questioning the audiologist while impressions were taken of Katie's ears so they could make moulds for hearing aids.
"Like many hearing families of deaf children, those first few months were very hard with lots of hospital appointments and just getting used to the reality of a deaf child.
"Katie began wearing hearing aids when she was five weeks old and was very tolerant of them; she realised that they helped her and once she got to around 10 months, she was good at keeping them in."
Yet as Katie approached her first birthday, Abbie and Martin noticed a change in her behaviour. She wasn't happy and was starting to pull her hearing aids out.
Further tests revealed that Katie's hearing had deteriorated dramatically and she now had severe hearing loss. By the time she was 20 months old, she was profoundly deaf.
"It was very hard at times," admits Abbie. "When Katie was born, our eldest boy, Tom, had just turned four and Cameron, two.
"There was nothing we could do but accept it. We couldn't change it and we couldn't fix it, so we decided we would do everything we possibly could to help her.
"When Katie was diagnosed, one of the nursing staff said to us as we walked out, 'She's exactly the same baby you came in with – we just know more about her'. That's true. She was still our Katie."
Abbie and Martin researched every possible way of helping their daughter educationally and socially and through a parents' forum page on The National Deaf Children's Society website, came across the term Auditory Verbal Therapy (AVT) and the charity AVUK, which uses this therapy to help deaf babies and young children learn to listen and speak.
"The stories and videos of the children who had been through the AV programme blew me away," recalls Abbie. "At the ages of four and five these children's use of speech and language was indistinguishable from that of hearing children."
Unfortunately, like a growing number of treatments and therapies, AVT is not available on the NHS in Northern Ireland, although it is available in other parts of the UK and is standard therapy in the US, Australia and South Africa.
Despite this, Abbie and Martin immediately got in touch with the organisation and arranged to take Katie to London for an assessment.
Abbie recalls: "We flew to London in September 2012 and spent 90 minutes with the AV therapist during which time Katie said 'up', a fantastic effort from my 15-month-old severely deaf daughter.
"We were absolutely convinced that AV therapy would make a positive difference to Katie and was the 'missing link' in the support she had.
"AVT makes language very interesting for a child – normal speech can be quite quick and not easy for a hearing-impaired child to pick up on. In AVT, they extend the length of each word and introduce different levels of tone into the way they say a word.
"That first day, they sat Katie at a high table and brought out a penguin toy which was going up stairs. When it got to the top, it slid all the way down to the bottom.
"The AV therapist would say 'up' and it would move up a bit, then I would say 'up' and it moved again.
"Katie would point at it and motion for it to go up, but they wouldn't move it until Katie vocalised for it to move rather than gesture.
"It was about teaching Katie that her voice meant something and that she could use it.
"It was very different from anything I'd experienced with speech therapists and Katie's language started to progress rapidly.
"The main stumbling block for us was that AVUK had offices in Oxford and London and we are located just outside Belfast, so any therapy meant a big financial commitment in terms of fees and travel.
"But we both agreed that we had to do this for our daughter's future and started monthly therapy sessions in London."
In May this year, Katie was fitted with a cochlear implant (a small electronic device that provides a sense of sound to a person who is profoundly deaf) and this together with the AVT sessions, has helped her development enormously.
"Katie is three years old now and her language is at the level of a two-and-a-half-year-old and she is catching up really fast," says Abbie. "She talks to her brothers (now aged 7 and 5) all the time and they're very good at talking back to her. She can also sign. Both boys have some sign language and they know to tap her on the shoulder and sign if she isn't wearing the external part of her implant.
"The whole family can sign. Although Katie is naturally oral and we want her to speak and to use her implant to its optimum, we're very conscious that she is deaf and will always be deaf.
"When she's swimming, or in the bath, she can't wear her implant and if she finds it difficult to lip read, she needs to be able to sign. Developmentally, Katie has hit all the same milestones as her brothers – she crawled at eight months, she was walking on her first birthday and she said her first word at 14 months. She's a very independent, determined little girl. There's nothing she will allow you to do for her if she can do it herself."
Abbie is sympathetic to the controversy in some areas of the deaf community, surrounding cochlear implants and therapies such as AV.
"It's a very individual choice," she says. "I appreciate that some people who use British Sign Language (BSL), feel that by using cochlear implants and allowing a person to 'hear', it's taking away their cultural identity.
"But we feel very strongly that we've made the right decision for our daughter.
"Katie will always be deaf. We're not trying to change that. Part of a cochlear implant is in the skull and there is also a gadget on the outside on her ears, which looks very much like a hearing aid, and if she takes this off, she's completely deaf.
"An implant will never give someone normal hearing abilities, but it allows someone who is profoundly deaf to access enough sound to interact with someone through speech.
"We're not trying to make her not deaf. We just want her to be able to fulfil her potential and develop her language to an age-appropriate level so she can attend a mainstream school. That's important so that she doesn't feel excluded."
Business development manager Abbie and Martin, a regional sales manager, appreciate that their personal circumstances afforded them the ability to make the monthly journey to London with Katie for AVT, but they realise that many families in Northern Ireland are missing out.
Abbie says: "I was aware of other parents who wanted AV therapy for their child, but couldn't afford the cost of sessions and travel.
"In collaboration, with some of these families, we put in an application to the Big Lottery Fund to set up an outreach programme, where a therapist would come over to Northern Ireland for two days, every six to seven weeks, and work with six families.
"The AV therapist would then share the information from each session with all other professionals involved with the child. In January, we were awarded £10,000 for a pilot programme which started in May.
"When the therapist first came over, they held a session in the Auditory Implant Centre, in Belfast, for professionals working here to raise awareness of AVT.
"People travelled from all over the province and from down south, where the therapy is also unavailable.
"There's a growing interest in AVT and we need a qualified practitioner to be based in Northern Ireland.
"It has been of incredible benefit to Katie and also to the other six families involved in the initial programme.
"Hearing aids and cochlear implants are very expensive (£20k-£25k for the device alone) and we're not saying that existing services are no good. We're saying that there is something else that could be done to help deaf children and families get the most out of such expensive technology.
"I want to increase demand for AVT to a level where a Northern Ireland-based therapist would be funded by the NHS. It would be ideal if we could have a therapist based in the Implant Centre, who would oversee the whole of the province."
She adds: "Why should deaf children in Northern Ireland miss out on a therapy that children in other parts of the UK get through the NHS?"
Abbie McKenna runs The Hearing Hub, a local group of The National Deaf Children's Society. For contact information go to: www.ndcs.org.uk/ and click on family support and then support in your area.
How parents become teachers
- Auditory-Verbal Therapy is an intensive, play-based, specialised therapy designed to teach a child to use the hearing provided by a hearing aid or a cochlear implant for understanding speech and learning to talk
- The child is taught to develop hearing as an active sense so that listening becomes automatic and the child seeks out sounds in life
- Hearing and active listening become an integral part of communication, recreation, socialisation, education, and work
- Parents and care-givers are supported in their role as the child’s most important teacher of language, and the goal is for the child to attend mainstream education
- Through guidance, coaching, and demonstration, parents become the primary facilitators of their child’s spoken language development. For further information go to: www.avuk.org