The Barker family story
Joshua, 8 and Dominic, 5 are two lively, fun-loving little boys with a real love of life. They are also both profoundly deaf. Mum Amanda tells her story:
When Josh was born, we had no reason to believe that there was anything wrong with his hearing, but at the age of seven months he failed his distraction test, and then again at nine months.
We were referred for further tests but Josh couldn’t sit still for long enough and there was no confirmation of a problem. We still didn’t think there was anything wrong – he seemed to be behaving normally and was a very happy, sociable baby. Looking back, what he didn’t do was progress beyond the babbling stage.
When Josh was nearly 18 months old, further tests confirmed that he was profoundly deaf, as a result of a mixed conductive and sensorineural hearing loss. That day will stay in our minds forever. We felt that it was the end of our world; that Josh would never be able to speak to us, that he would have to go to a special school and that he would never be able to follow in his daddy’s footsteps and be a pilot. We look back now, when we see how well both boys are doing and realise how wrong we were. It was actually the start of a long, hard and emotional, but very rewarding journey. We knew nothing about deafness but became very quick learners!
Investigations showed that Josh has a Mondini defect, with a probable link to Pendred’s syndrome. This type of hearing loss is associated with a fluctuating loss and a probable deterioration over time. At that time I was pregnant with Dom and we were told that there was a 1 in 4 chance that he would have the same problems.
Josh was subsequently referred to the cochlear implant team who felt he would benefit from an implant. It was a really tough decision to make as he was doing so well with his aids, but we decided to go ahead and are so glad we did. He was implanted with a Nucleus 24 3G BTE at the Manchester CI Centre in January 2004, not long after his fourth birthday, and has never looked back.
He attends his local mainstream school and loves it. Even with his implant it is easy to forget how difficult it still is for him in such a busy, fast moving environment, but he gives it his all and is doing really well. He is one of the boys and loves nothing better than a good kick around in the playground, but he is also popular with the girls!
When Dom was born, because of the genetic link, he was tested at two days old, and the ABR showed that he too was profoundly deaf. I cried even though we were expecting it, but it was slightly easier to come to terms with as we’d been there before so knew what to expect.
He got his first body worn hearing aids when he was eight weeks old, (interesting when trying to breast feed), and his first BTE aids at five months. From the outset Dom’s hearing was worse than Josh’s and he was referred for a cochlear implant much earlier. Having seen how much Josh had benefited, we were desperate to get on with it, but the process took time and he was implanted with a bodyworn Nucleus 24 CI at the Manchester Centre in November 2004 – just before his second birthday.
He has now had the implant for just over three years and the difference is amazing. Before his implant he had very few words and now you just can’t shut him up! He is a real character who will talk to anyone and everyone. He loves anything to do with tractors, trains, lorries, football and his big brother. The bond between him and Josh is very special and it is wonderful to hear them talking to each other and even arguing. Dom attends the same school as his brother and loves it.
They never cease to amaze us at how well they cope with whatever life throws at them and are fantastic role models of what can be done with the right technology and support – a brilliant school, fantastic support assistants, teachers of the deaf and a cochlear implant.
