Cochlear implants open up a new world of hearing

From: Jakarta Post, Indonesia - Jun 14, 2006

Medical teams in Surabaya are set for the first cochlear implant operation outside Jakarta.

The Jakarta Post contributor Duncan Graham reports:

When Surabaya psychologist Sinta Nursimah got rubella in the first trimester of her pregnancy she and her husband Sri Gutomo knew there'd be problems.

This common infectious disease, also known as German measles, is the number-one cause of childhood deafness in Indonesia.

Their baby would almost certainly be afflicted with a degree of hearing loss. But it wasn't till Dian was born that they discovered the loss was total.

"We were told by a doctor not to do anything for a few years," said Sri who is a psychologist. "That was absolutely the wrong information: The earlier the better for medical intervention."

Instead of retreating in shame like many families with a handicapped child who believe the disability is a curse for wrongdoing, they set out to learn more.

While on a training course in Western Australia Sri scoured libraries for information, visited schools for the deaf, talked to experts and came back with a solution: a cochlear implant (see sidebar)

This Australian invention allows the deaf to hear, speak and lead a normal life.

"The other option was for Dian to learn sign language but that's extremely limiting," said Sri.

"She wouldn't have been able to attend mainstream schools and her education would suffer."

So when Dian was three they took her to Perth for a cochlear implant. Now the child is attending a normal Islamic school, is ranked with the top five students and can hear, speak and sing. There's now no auditory reason why she can't reach her full potential.

It sounds like a miracle cure, but it's not that easy. Candidates for the operation have to be screened and tested extensively for about three months. Post-operation therapy is vital and must involve the whole family. That takes time, patience and money.

The experience transformed the couple's life. They've turned a negative into a positive and are now running Yayasan Aurica, an organization dedicated to helping families with deaf children. They have also been lobbying to get the operation available in East Java.

Provided there are no hitches a Malaysian surgeon will come to Surabaya next month (July) and implant a device in a child. Local doctors who want to be trained in the technique will watch the operation.

Most Indonesian parents opt for surgery in Australia or Singapore. It's available in Jakarta but Sri said only about 35 operations had been conducted.

"We want the operation to be conducted here so we can say to the government that there's an alternative treatment that can allow a child live normally and productively and not use a special school," he said.

"It's cheaper and easier to manage implant recipients if the surgery can be done in Surabaya.

"Every time we approach the government for help they always say `there's no money.' They don't seem to be interested in exploring the new technologies. So we've had to do everything ourselves."

Yayasan Aurica is a parent-funded, non-governmental organization with about 60 children undergoing assessment or therapy. Four specialist teachers are employed.

Self-help groups concerned with a specific medical condition are still rare in Indonesia. Organizations overseas often develop international connections via the Internet. They build up a wealth of information on causes and treatment which is often far beyond the knowledge of local doctors.

There are no clear figures on the number of deaf people in Indonesia. The World Health Organization (WHO) says there are 250 million worldwide, with two-thirds in developing countries.

Almost all industrialized nations have anti-rubella vaccination programs for teenage girls. In Australia this service is free. Indonesians have to pay about Rp 100,000 for the vaccine, so most take the risk.

The first multichannel cochlear implant was in Melbourne in 1978. Now more than 100,000 people around the world have implants -- but the recipients tend to be rich or from a country with a supportive health system. In Indonesia the cost is about Rp 300 million (US$ 34,000).

Hearing aids for children who aren't totally impaired are also expensive. Basic devices are priced from Rp 3 to 8 million (US$ 310 to $860); the more sophisticated up to Rp 12 million. The cost is inflated because the devices are listed as electronic goods subject to 20 per cent tax.

Yayasan Aurica is also lobbying to have hearing aids classified as health equipment so they can be imported tax-free.

(For further details contact Yayasan Aurica on (031) 5994571 or e-mail yayasan_aurica@telkom.net.id)

© 2006 The Jakarta Post.