WATCH: Gift of sound opens up the world
Which of the five human senses is the most important? Is it that of sight, hearing, taste, smell or touch? Most will argue that they are all important and it is impossible to choose.
For Belgravia family Colin and Rowena Williams helping their baby make sense of a world he couldn’t hear was a steep learning curve. When their second child came along and was also diagnosed as hearing impaired, it was just as heartbreaking.
That there was no history of anyone in their family being hearing impaired meant they had to learn about their children’s world from scratch.
Nine years ago, when the Williams welcomed first child, Lincoln, into the world they could not have anticipated the road they would have to follow.
Despite meeting all his developmental milestones, which he continued to do until aged two, a test at 13 months revealed Lincoln to be hearing impaired.
“It came as a shock to us. It was a very confusing time. There was no one in either of our families that was deaf and so no one could explain why our son could not hear,” Rowena said.
As first time parents, Colin and Rowena thought nothing could be done for their son. They thought he and the rest of the family would have to learn sign language.
The first doctor they consulted about his hearing referred them to an audiologist at Frere Hospital where it was found that Lincoln was profoundly deaf in both ears.
They sought a second opinion, and after receiving the same diagnosis, returned to Frere where they began discussions about getting their son a cochlear implant.
A cochlear implant is an electronic medical device that replaces the function of the damaged inner ear.
Unlike hearing aids, which make sounds louder, cochlear implants do the work of damaged parts of the inner ear (cochlea) to provide sound signals to the brain.
“He cried like all babies when he was born. Made all the normal baby noises but he just could not respond to us when we spoke to him. It was challenging. His eyesight has always been great. He responded very quickly to movement,” she said.
Out of fear of him being misunderstood, Rowena said she did not want anyone else to take care of their son in those early years.
Receiving the cochlear implant from Frere Hospital turned around the lives of the family.
You would think that one challenge for the family was enough. However, the couple’s second child, Cairo, was born with the same audiological impairment.
“My husband was angry that it happened again with our second born despite all the tests that were done during my pregnancy. We came to terms with it and we moved on with our lives.”
Although Rowena suspected Cairo might have a hearing impairment when he was just six weeks old, it was confirmed by an audiologist when he was five months old.
“My voice was the one thing I always wanted my sons to hear. It broke my heart to learn that our second son also had a problem but because we had gone through the same process with Lincoln, we knew what steps to take,” she said.
As a result, baby Cairo was only 10 months old when he received his cochlear implant. He was Frere Hospital’s youngest patient to have a cochlear implant activated.
“Our sons are our biggest blessings. I cannot explain how grateful we are that Frere helped.
“We have been blessed with two healthy boys who, thanks to the implants, will be able to live fulfilled lives. We are perfectly happy and they make our lives complete,” she said.
The internal cochlear implant is a once-off procedure, while the external processer is replaced as and when technology improves.
Frere Hospital CEO Dr Rolene Wagner said the hospital always wants the best outcome for their patients.
“Cairo and Ethan, being recipients of the cochlear implants and having their cochlear mapping done right here in the Eastern Cape, close to their homes, achieves this purpose.
“Their lives will be immeasurably improved with their ability to hear at an early age. This will put their natural development back on track with their peers. And so both little boys have a brighter future because of these cochlear implants,” Wagner said.
Lillian Gora said when she discovered that her son was deaf at six months old, her world fell apart.
Gora had asked a doctor to test her child at the urging of her mother.
“I took the news very badly. I was a new mom and I could not believe what was happening. I cried a lot. I thought of all the things my son could not hear and it broke my heart. I wanted him to know that I loved him, but he could not hear me say it. I kissed and hugged him a lot so that he would know. My husband took it better than I did. I really struggled,” she said.
Gora said after the initial shock wore off she accepted their situation and looked for solutions.
Her search for the perfect solution lead her to Frere Hospital. Just a few weeks shy of his second birthday, baby Ethan received his cochlear implant, also funded by the state.
“It was amazing to watch him respond to hearing sound for the first time,” she said.
Gora: “At first he had a hearing aid but it was not very effective. He would often take it out and remove the batteries. Now he is fascinated by the lights on the cochlear device.”
She encouraged parents to trust their instincts when suspecting something may be different about their children, even as first time parents.
“I knew something was amiss but I didn’t know what. Elders in the family did not take me seriously and said children develop in their own time, saying I should not be concerned.
“Had I acted when my gut told me to, we could have had the implant earlier,” she said.
Head of Frere Hospital’s speech and audiology unit, Adri Schlichting, is the only person qualified to do cochlear mapping in the central and eastern parts of the province, in both the public and private sectors.
She did her cochlear mapping training through Stellenbosch University 11 years ago and, to date, has done more than a dozen switch-ons in total from both sectors and sees an average of 25 cochlear implant patients a month.
According to a 2009 report in the International Journal of Pediatric Otorhinolaryngology, South Africa is uniquely positioned in terms of its health care infrastructure with available training for hearing health care professionals such as audiologists and otolaryngologists, to lead the way in sub-Saharan Africa for implementing widespread and systematic Early Hearing Detection and Intervention (EHDI) services.
“Despite this comparative advantage over other countries in the region it is clear that EHDI services are not reaching the overwhelming majority of the numerous newborns and infants with permanent hearing loss,” part of the report reads. — siyab@dispatch.co.za