A NEW WORLD OF HEARING © Duncan Graham 2006
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 be 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. This 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 organisation 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 which can let 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 ‘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-government organisation 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. Organisations overseas often develop international connections through 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 the developing countries
Almost all industrialised 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 multi-channel 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 between Rp 3 to 8 million (US $860); the more sophisticated up to Rp 12 million (US $ 1,400). 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.
A cochlear implant is not a hearing aid. It’s an electronic device located in the skull and which receives signals from a transmitter. This is worn behind the ear and looks like a hearing aid.
The speech processor is in a lightweight box about the size of a
small handphone. This can be worn around the neck or on a belt. The latest versions are in an earpiece.
Sounds are picked up by a microphone and passed to the battery-powered processor. This selects and filters the sounds and sends these as electronic signals to the transmitter. This looks like a hearing aid.
The signals go to the implant via electromagnetic induction through a magnet worn on the side of the head. This also holds the implant receiver in place. The magnet and receiver are about the size of a Rp 200 coin.
The implant includes a long, thin self-curling wire carrying an array of electrodes. The cable is wound through the cochlea, the shell-shaped organ behind the eardrum.
There are no wires connecting the internal and external devices.
The operation takes around two hours. A hole is drilled in the skull, the implant receiver fitted under the skin and the wire fed into the cochlea. Recovery in hospital usually takes one or two days. The operation is best performed on children under six. Usually only one implant is used.
The implant doesn’t amplify sounds. It bypasses the outer and inner ear and stimulates the auditory nerves. The brain has to be trained to understand these signals and convert them into meaning and speech. It can take at least 18 months of therapy before a child can develop an abstract vocabulary, answer complex questions and follow conversations.
This is why total and continuous family involvement is required.
The implant doesn’t need servicing and isn’t affected by the child’s growth. A person with a cochlear implant can swim and shower but should avoid contact sports. The technology is continually being updated and the external parts can be replaced.
(For more details contact Yayasan Aurica on (031) 5994571 or e-mail firstname.lastname@example.org)
(First published in The Jakarta Post 14 June 06)