Implant shatters kids’ silent world

Coping with deafness is likely to be an intimidating prospect at any time of life, but for parents of young children, the experience can be even more frightening. ANDREW McGILL spoke to two families to find out how they have coped with deafness in their c

Coping with deafness is likely to be an intimidating prospect at any time of life, but for parents of young children, the experience can be even more frightening.

ANDREW McGILL spoke to two families to find out how they have coped with deafness in their children - and the benefits of a miraculous procedure known as a cochlear implant.

WHEN Nick and Wendy Hudson's second child Bethany was born, no one knew what was wrong with her.

Bethany was born 12 weeks prematurely in June 2001. She spent the first 18 months of her life in hospitals up and down the country while doctors tried to diagnose exactly why she was less responsive than her peers.

"The doctors wondered if she might have a mental disability but we knew she was very good visually and very sharp," said Nick, 37.

"Eventually we found a doctor in Nottingham who listed Bethany's symptoms and we nodded to every one. He told us she had Bartter's Syndrome."

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The condition is a complaint relating to the kidneys and often means the sufferer is also profoundly deaf, as in Bethany's case. With the diagnosis confirmed, the Hudsons returned home to Bluntisham to decide what to do next.

"It wasn't a case of being in shock because we always knew that something was wrong," said Nick, who is minister of Bluntisham Baptist Church. "It was more a case of - right, now we know what's wrong, let's do something about it."

While it took the Hudsons 18 months to discover their child was deaf, Paul and Hilary Williamson, from Hail Weston, were faced with a different problem after the birth of their first child.

It wasn't long after his birth in April 2003 that Oscar was diagnosed as profoundly deaf - but no one could tell the Williamsons why.

"To this day we don't know why Oscar is deaf," said Hilary, 38. "The doctors kept ruling things out and no one was ever able to give us a firm answer."

Like the Hudsons, there is no history of deafness in the Williamson family and the couple found themselves plunged into a strange and unfamiliar world they had no experience of.

Thankfully, support services in place at Cambridgeshire County Council proved a blessing and from the age of three months Oscar was assigned a support worker for weekly visits - a service which continues to this day.

As well as home support, both families began attending regular events with other deaf children - giving Oscar and Bethany the chance to mix with those in a similar position to them.

Occupational health advisor Hilary said: "The chance to meet other families with deaf children was a great help because it allowed us to see others further down the line and receive advice.

"Now we are in the reverse position and are able to offer advice to new parents."

Jim Fitzgerald, from the Cambridge and Huntingdon deaf children's society, said mixing was very important part of the child's development.

"And is as much of a support to the parents as to the children themselves," he added.

As both Oscar and Bethany grew older, doctors began to examine the possibility that they might be suitable for a cochlear implant.

The costly procedure, available on the NHS, involves a lengthy operation which effectively bypasses the hearing problem by connecting a microphone on the outer ear to the brain via electrodes and a receiver/stimulator on the skull.

Around 120,000 people worldwide have had cochlear implants, mostly in developed countries and some consider the procedure a controversial one.

Nick explained: "Some people believe that if you are born deaf or become deaf then that is how you are meant to be and I do sympathise with that point of view.

"Giving surgeons the go-ahead to drill a hole in your child's skull is not an easy decision but together we decided it would be the best thing for Bethany.

"We haven't regretted it once and 'switch-on day' where your child gains another sense is a remarkable experience."

Bethany underwent the operation shortly before her third birthday and immediately could hear tinny, robotic-style sounds whereas before there was nothing.

Children who have had cochlear implants receive follow-up checks every six months to adjust their microphones and monitor progress.

The microphones are removable and are attached to the child's head via a magnet in the skull - they are not suitable for use in the wet.

With her newfound sense, craft-mad Bethany was able to begin to develop her language skills, which has continued with the support of her school - St Helen's, in Bluntisham.

"She still can't quite get the letter f right, but she's working on it," Nick said. "Effectively, she started from zero with her speech at three years old but she is catching up all the time."

Bethany, her parents and older brother Matthew, eight, have also been taking sign language lessons since her diagnosis, giving the family a unique bond.

With his early diagnosis, Oscar was able to begin learning to speak after his cochlear implant at 16 months.

"Oscar has been catching up all the time with the support of Crosshall Infants and having the operation has definitely made his life easier," said Hilary.

"He is a phenomenal lip-reader and is fully accepted by all his friends at school - he loves getting up in the morning to go."

* The Cambridge and Huntingdon deaf children's society is organising a sponsored walk in London on March 9. Proceeds raised will be used to send its members to Disneyland Paris next year. Contact the group on 01480 211700.