Hope for children with hearing loss

Natalie with her classmates. She was one of the top UPSR candidates from her school.

WHEN Natalie was born at the Kuala Lumpur General Hospital in 2004, her parents Raymond Bong and Gina Tan were filled with joy and happiness.

To parents, having a newborn is a precious gift from God, which helps them to have a deeper understanding of the meaning of life.

However, two days later, elation turned into despair when doctors diagnosed Natalie with a congenital hearing problem.

“The news was devastating. It broke our hearts to think our little girl was born with such a problem. All of a sudden, our joy turned to anguish,” 45-year-old Bong told thesundaypost.

Further tests confirmed Natalie was suffering from severe hearing loss and the only solution was to go for cochlear implant provided she was fit for the surgery.

However, Bong, an insurance executive, was not about to give up on finding a solution to his daughter’s problem and delved straight into looking for the best remedy.

Over the next couple of months, he did a lot of research, referred Natalie to ENT specialists and constantly followed up on her case.

After about three months, he decided her daughter should go for cochlear implant but not before familiarising her with wearing the hearing device.

A cochlear implant is an electronic medical device that replaces the function of the damaged inner ear.

Unlike hearing aids which amplify sounds, cochlear implants do the work of damaged parts of the inner ear (cochlear) to provide sound signals to the brain.

Eleven months later, on July 7, 2005, Natalie finally went under the knife to have her left ear fitted with the cochlear implant device at a cost of RM110,000.

Three years later on April 6, 2008, another cochlear implant surgery was performed on the right side of her ear, costing another RM80,000.

And today, after the surgeries, Natalie leads a normal and healthy life. Motivated, confident and energetic, she excels in her studies, sports and music. All these would not have been possible had her parents not sought early treatment for her hearing loss.

“Parents of children born with hearing problems should seek early intervention. The earlier the better and the greater the chance for their children to grow up and live a normal life,” Bong advised.

He said about five in every 1,000 babies born in the country have hearing problems, adding that hearing ability is important for children to develop speech and language skills while growing up.

“In the past, most parents weren’t aware of such problems because usually, no after-birth hearing tests were conducted on babies.

“So hearing loss in children often went undetected until they were around two or three years old when it became obvious they were not talking yet.

“When children were diagnosed with hearing loss at that age, it would be too late to seek treatment,” he explained.

Bong, who has 13 years’ experience in the field of impaired hearing, said he wanted to tell parents not to lose hope should their children be born with hearing loss.

“Seek early intervention and get an early diagnosis. There’s always hope for those born with hearing loss to live a normal life.”

He said it is important for such children to get early treatment through screening tests to minimise problems that may crop up in later years.

Bong was in Sibu to conduct a forum entitled ‘How to help children with hearing loss’ at the Agape Centre. More than 60 people, including parents, teachers, nurses and speech therapists, were in attendance.

The forum was organised by the Sibu Community-based Rehabilitation Centre (PDK) in collaboration with Agape Centre.

He said 60 per cent of children born deaf were due to unknown causes, while 40 per cent could be due to complications during pregnancy, high fever or rubella.

“Whatever the causes, so long as the parents know their children are born with hearing loss and immediately seek remedy, the chances of the children living a normal life are very high,” he said.

Natalie practises on her piano.

Gift of life

Describing cochlear implant surgery as a gift of life, Bong said the age of one to two years is the best time to have cochlear implant, adding, “The earlier they go for surgery, the better the chance for them to live a normal life as they grow up.”

Quick action

On Natalie’s case, he said it was fortunate they acted fast.

He revealed after the cochlear implant, he and his wife spent countless hours guiding Natalie in reading and memorising the basic words.

“She picked up very fast and could follow the speech and audio within a short time. After one year, her reading and listening ability was on par with normal children.”

Since 2005, Natalie has upgraded her cochlear implant devices twice. The first was in 2011 when she changed the model to cochlear nuclear 5 and then in 2014 to cochlear nuclear 6.

Bong said the hearing devices had to be upgraded for sound enhancement to improve listening skills.

The hearing devices are not cheap. Each replacement costs about RM40,000 but Bong said they want to give their daughter the best start in life.

“We are very concerned about the development of her learning skills – that’s why we need to upgrade the models to help her deal with things she encounters in her life.”

Natalie speaks during a student forum at Sibu Woodlands International School.

Disability is not inability

Natalie doesn’t look like she was born with a disability.

She is normal in all aspects, and like children her age, likes to play video games. Her disability is certainly not an inability to do the things she likes.

“I’m getting used to wearing this hearing device. It’s like wearing glasses. I have already accepted this as part of my life. Without it, I simply cannot communicate with the world,” she said.

Natalie is one of the brightest students at SMK Bandar Utama Damasara 3, a cluster school in Kuala Lumpur.

She is multilingual and excels in sports such as taekwondo – she has a black belt. She constantly joins her father for swimming sessions as well.

A school prefect, Natalie has represented SMK Bandar Utama Damasara 3 in a number of speech contests, and was master of ceremony at several big events such as the 2014 NECIC Conference in Kuala Lumpur. Her constant exposure to such events at a young age has enabled her to excel in story-telling contests where she has won numerous prizes.

At home, after helping her parents with the house chores, Natalie practises the piano. Last year, she was picked to feature in a Disability Awareness Video Campaign in Kuala Lumpur.

Highlighting the fact that disability is not inability, the video ‘We Are All Fans’ was posted on Facebook in May and can found on the Unicef Malaysia page.

Meanwhile, Bong, who graduated from University of Southern Queensland, reminded parents of children born with hearing problems to approach a medical doctor for a recommendation for cochlear implant.

“I repeat, the earlier you get help, the better the chances of getting your child cured.

“With cochlear implant, a mute child will be able to speak with rehabilitation and after that, he or she can live a normal life,” he said.

Natalie with her family members at an event in Kuala Lumpur.

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