Voices of families raising hearing impaired children

“Your son is deaf, and if you have Sh5 million, we can begin working on his ear to do some corrective work.” These words uttered by an experienced audiologist hammered right into Linet Otinibe’s heart, shattering it into smithereens.

Linet says she was in turmoil. “Here I am yet to digest the news of my son’s condition, and this specialist is already demanding Sh5 million, which we did not have, for a unilateral cochlear implant surgery (for one side of the ear only).”

Linet’s story mirrors what many people who are raising deaf children go through — the shattering news, denial and the ups and downs of looking for help for their children.

It is a journey filled with betrayals, conmanship by those one should trust but beneath the surface as an undertow lies the triumphal parental love that has seen them batten down the hatches and ride the choppy waters of raising children with special needs.

It was this search of answers that led Linet to other parents raising such children, one of whom had founded ‘Hands and Voices’, an organisation that brings together parents who have children with special needs, specifically hearing impairment.

Linet says the founders of the group got off to a rocky start because for one, they did not know how to contact other parents with hearing-impaired children.

The founders asked the specialist, who was seeing their children, for contacts of other parents in a similar situation but citing doctor-patient confidentiality, he declined.

“They took a different approach and typed a brief introduction plus the contacts and printed it. They made many copies and left them with the specialist’s secretary to distribute to parents who came to the clinic. Soon they were getting calls and e-mails and when the numbers started rising, they held their first meeting in one of the members’ house,” she says.

The members of 'Hands and Voices’ recently moved around paediatrician clinics in Nairobi distributing flyers promoting their organisation. They designated yesterday as a deaf advocacy day.

Sharing their views with this writer, the parents told of the joy they have when their children make even the tiniest of progress.

But it is not always smiles. For example, there are rogue medical practitioners who collude with hearing aid manufacturers, forcing parents to buy particular brands, some of them obsolete.

“One should be left to make own choices,” says Blaice Apondi echoing ‘Hands and Voices’ motto of ‘What works for your child is what makes the choice right’.

All these personal experiences allude to the struggles parents with differently abled children go through. Some have had to travel many miles daily for their children to access suitable education institutions.

Here are their stories:

Linet Otibine

When Linet’s son was 18 months old, he developed a bad case of tonsillitis, which resulted in high fever that forced his admission to hospital.

Three weeks later, Linet started noticing changes in the boy. Whereas hitherto he would be the first to rush to the door whenever his mother came back home, he now seemed disinterested.

But Linet says she was very lucky that her employer champions work-life-balance and hence she gets to spend adequate time with her children.

“I wonder what would have happened if my work entailed getting home very late at night. We would not have picked the changes in good time.,” she says.

Then there was a time another of her children was sick and she took him to the doctor, carrying along the young one. As they were there, she decided to seek guidance from the doctor and was referred to an Ear Nose and Throat specialist and later an audiologist. This audiologist's clinic did the checks.

The expert’s verdict was shocking in many ways: “Your son is deaf and if you have five million shillings, we can begin working on his ear to do some corrective work”,

Linet says her son's father was not as shaken as she was by the news, and that mattered a lot. It was during this turmoil that someone introduced her to two other parents in similar circumstances; and she says the two proved to be quite helpful as she navigated the new world she had been thrust into.

Linet also remembers a sad story where a doctor sold them an analogue hearing aid for Sh80,000 only for another doctor to tell them that the particular brand was not digital and would go for Sh20,000.

Linet's son later got his first cochlear implant in November 2015 and the second in February 2017; both surgeries were done in India and paid for by her employer's insurance policy. She says her local community came to know the importance of hearing aids when her son lost his cochlear sound processor (receives and transmits sound to the implant and auditory nerve) for his first implant in church barely two months after their return from India.

It took nearly a month before it was found. The family was in the process of taking a loan to buy a replacement; it turned out that it was snatched by an 11-year-old boy in church.

“Nowadays they take a lot of interest in my son. Even in church (St. Jude Catholic Church Donholm), the ushers are always alert checking on him,” she says. Linet emphasises the need for the community to take interest in supporting differently abled persons in their midst.

Linet is also of the opinion that insurance companies should not be rigid on supporting the treatment of similar special cases since rules are not cast in stone.

For instance, it should be possible to support hearing loss in similar way to cancer and kidney treatment. The burden of treatment and rehabilitation is very huge; and parents/care givers should be given all the help and support in the journey, she says. The ultimate goal for all should be to achieve effective social integration, independence and economic contribution by those affected by hearing loss.

Linet's son is now six years old and undertaking integrated learning, benefiting well from the Competency Based Learning system.

Blaice Onyango

When some officials of ‘Hands and Voices’ contacted her wanting to use the picture of her son in a promotion flyer, Blaice flatly refused. She could not countenance the fact that she would be exposing her son to the whole world.

But she later relented after some persuasion. And now her son’s picture features prominently in the flyer that the organisation is using.

Blaice explains: “Parents of special needs children are always overprotective. Anything negative said or implied about their child will be met with immediate resistance.”

For Blaice, the journey with their son started when they got alarmed because he was taking too long to speak. Their relatives calmed them down, saying it was nothing to worry about. If anything, she was told that her husband equally had delayed milestones — walked and talked late.

Her son was also checked for autism, but this drew a blank. He would display some level of intelligence unusual for children his age and this made them even more worried because they believed he should have then picked up speech equally fast.

All the same, Blaice insisted that they see a specialist over the same since she realised she had to tap baby Andrew to get his attention and had to keep eye contact for them to communicate.

Upon taking the child for screening for hearing loss a third time, her fears were confirmed. Andrew was diagnosed with severe to profound sensorineural hearing loss.

“Call it a mother’s instinct but somehow I had known all along that something was terribly wrong. The specialist only confirmed my suspicions,” she says.

Both her and the husband were in denial, and to deal with the situation she turned to prayer.

Meanwhile, she embarked on researching on the best treatment her son could get. She finally settled on India, a decision that took her on a collision course with the National Hospital Insurance Fund and some local medics.

Whereas NHIF was willing to give money towards the boy’s treatment, the disbursement was on condition that the cochlear implant surgery be done in Kenya.

“I know what is best for my child and it hurts to imagine that a fund that I contribute to religiously could not help me when I needed them the most” She says.

In desperation, Blaice reached out to her family and her HR team, who managed to assist in securing help through the bank’s insurance provider, and she managed to seek treatment for her son in India.

“I must say my HR have been so supportive in walking this journey with me and have helped make it a lot easier than it would have otherwise been,” she says.

She came back from India and started the cochlear implant journey with her son. Little did she know that the journey ahead would be harder than she had anticipated.

“After the surgery, speech therapy is a must for a minimum of two years otherwise all the work would be in vain,” Blaice says.

She says the insurance industry needs to be sensitive and alive to the fact that hearing loss is a medical issue just like any other, and which requires support for speech therapy just like occupational therapy is required as a form of treatment.

Then there were the doctors who were not willing to give a referral for her to go to India. “They insisted that the surgery must be done here even though they could not share live success stories with me for comfort. It was quite frustrating,” she chuckles as she remembers the episode.

She recalls opting for a specific model of an implant other than the one the local medical team had recommended and when she approached the local team who were to do the surgery for her son, the lady she spoke to outrightly blurted out the words: that provider is stealing you from us.” This is when it dawned on me that my son was ‘a business opportunity’.

At this point I knew the India route was my option.

Blaice cries out to Kenya Revenue Authority to waive tax on hearing equipment and accessories.

She seeks to sensitise the Ministry of Education to become strict in checking how the deaf children are being handled in schools.

She also believes that integrated schools can serve the deaf and hard of hearing children better than having exclusive schools, and perhaps it is time to come up with more of these integrated schools.

She also cries out to the medical board to allow parents to have free will even when being supported financially because she believes that what works for her child is what is best at that given moment and with hearing loss, it is never a ‘one size fits all’ affair.

Geoffrey Mahinda

Geoffrey Mahinda is one of the only two men in ‘Hands and Voices’. I ask him whether he feels out of place and he answers, “I can do anything for my son and if being in this group can help him, I will stay here.”

Mahinda knew something was wrong with his son when he never stirred even if music was played at top volume. When he asked his mother about it, she answered that boys take long to talk. Mahinda went ahead and saw an audiologist who told him that the boy was deaf.

“My father refused to believe. He is very fond of my son because he is named after him. My father prevailed upon me to do two more tests and the results were still the same. This left me devastated,” he says.

Then there were the issues of superstition. According to Mahinda, some relatives came up with the theory that his grandmother’s dowry was never paid in full hence his son’s deafness. There were other times when some family members would take the boy for prayers and declare that he is healed and stop following the doctor’s regimen.

He was given hearing aids but the boy never responded to any sound stimulus. He opted for a cochlear implant done locally with the help of Egyptian surgeons.

For Mahinda’s son, the issue is complicated because he suffers from Attention-deficit/hyperactivity disorder.