Family Stories: Anna's Story
"We have 3 children - Ryan 8 ½, Clare 6 ½ and Anna 3 ½. Ryan has normal hearing, Clare is profoundly deaf in one ear, and Anna is profoundly deaf in both. All 3 children (and myself) have Waardenburg Syndrome, which is the cause of Clare and Anna's deafness.
Anna was born on 16th January 2000. We suspected that she couldn't hear when she was a few days old. We mentioned it to the midwife, the health visitor and the GP and eventually she was referred for testing when she was around 2 months old. There were various delays and to cut a long story short she was diagnosed as profoundly deaf at 5 ½ months old. She was aided 2 weeks later.
Initially it seemed she had no benefit from the hearing aids. After a couple of weeks they were turned up, then changed to more powerful ones, tweaked a bit more until we eventually began to think she was responding to some loud sounds. To start with the sounds we thought she heard were chainsaws, pneumatic drills etc, but gradually we thought she heard a few more subtle sounds. As she was clearly not hearing much she was referred to Great Ormond Street Hospital for a cochlear implant assessment.
Soon after Anna's hearing loss was diagnosed a friend of a friend introduced us to the Oxford AV programme (now AVUK). I rang Jacqueline Stokes and arranged to take Anna to see her. We were only really going to find out what it was all about but were so impressed with both Jacqueline and the AV approach that we arranged to go again 3 weeks later. We have been going regularly ever since.
In the sessions Jacqueline taught us how to develop Anna's listening and we began to incorporate these methods & strategies into our every day lives. This means that Anna doesn't just get an hours therapy every 3 or 4 weeks, “therapy” is continual and a natural part of daily life.
Over the next few months Anna progressed well. So well that when she was assessed for a cochlear implant at 18 months old she was considered ‘borderline' (i.e. she heard too much with her hearing aids) and both the hospital and ourselves opted to have her reassessed 6 months later.
Despite continued improvement we began to feel that Anna would benefit more from a cochlear implant and thankfully the hospital agreed to implant her, although they still considered her ‘borderline' - her aided levels were around 50 db. Ironically the listening skills we had taught Anna almost denied her the opportunity of a cochlear implant, although those same skills have undoubtedly given her a huge advantage now that she has her implant.
Anna had her operation in March last year and the device was ‘switched on' on 16th April 2002. The first week was very disappointing as it was clear Anna was hearing very little with the implant, but after the 2nd and 3rd mapping sessions she was already making sense of speech and since then we have not looked back.
This all seems a long time ago now. It is 18 months since Anna received her implant. We have continued AV therapy on roughly a monthly basis over the last year. Jacqueline continues to stretch Anna's auditory skills and she responds well.
Anna has just started her second year at mainstream nursery. Last year she attended the Elizabeth Foundation nursery for hearing impaired children for one day a week and our local nursery for two mornings. This year she is doing all 3 mornings at our local mainstream nursery. She is a very sociable girl, has made many friends and has a very happy life. She loves talking to people and usually asks anyone who'll listen ‘you got any pets?' and ‘what colour's your car?'. She loves to listen and talk and people are always commenting on how clear her speech is.
It is now 3 years since our first AV appointment and we hope that Anna will soon be ready to graduate i.e. her language skills will be equal or better than her hearing peers. I think she's nearly there. It will be a very emotional day when it finally comes as we've all worked long and hard for it. Anna has developed into a natural listener. The world of ‘choo choo' and ‘round and round' seem a very long way away. Three years ago we never would have dreamt it would lead us all to where we are now. It has been an amazing journey so far. Next year will bring a new challenge of school and I am confident that Anna will be more than ready for it. For now I am thoroughly enjoying spending time with her and doing all the things that 3 year olds and their mothers should be doing.
The Auditory Verbal Approach and Anna's cochlear implant have given her the gift of spoken language - and so much more besides."
Debby and Mark Chapman