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NGO brings high hopes to the world of deaf children

When Millicent Mabusela gave birth to her son Tumisho 13 years ago she had not contemplated he would have a disadvantage in life. He was chubby, healthy and smiling. But she realised something was wrong when, by the age of two, he had not uttered a word.

”I knew by that time he should be saying ‘mama’ at least,” says the single mother, who lives in Alexandra in Johannesburg. ”When he was three, I took him to the hospital to find out if there was something I was doing wrong as a mom but I never expected what they told me,” she says.

After a few hours of tests doctors and audiologists told her that her son was deaf. 

”And it was like I became deaf myself all of a sudden. I could not hear the doctor’s words anymore or anything else.”

After Millicent recovered from her initial shock she felt ”lost”. ”People were talking to me about things I have never heard before like implants, hearing aids and cued speech, until a lady from Hi Hopes [an organisation that supports families with deaf children] called me —that’s when things began to make sense and I began to start thinking Tumisho and I would have a chance in this life.”

Giving deaf babies the gift of language

[multimedia source=”http://bhekisisa.org/multimedia/2016-06-08-helping-those”]

Deafness in South Africa
Each day about 17 babies in South Africa are born deaf or with hearing impairments, according to a 2009 study published in the South African Medical Journal.

”In about half of these cases we don’t know the cause of hearing loss but the other half can be attributed to a number of things like contracting German measles when pregnant, drinking alcohol while pregnant, other viruses, complications during birth and neonatal stays in intensive care units,” says Claudine Storbeck, who heads up the Centre for Deaf Studies at the University of the Witwatersrand.

About 10 years ago Storbeck ”noticed a gap” in ”the support world for deaf people, particularly for families with deaf babies”.

”In wealthier countries early intervention for babies with hearing loss is standard therapy because it gives these kids such an advantage — an advantage many South African babies were losing out on,” she says.

She travelled to the United States’ Utah State University, which had one of the most reputable early intervention programmes for hearing loss in the world.

”I thought, why spend money developing an entirely new programme? Let’s rather replicate a successful existing one. And when I returned to South Africa in September 2006, Hi Hopes was born,” she says.

High hopes for Hi Hopes
The nongovernmental organisation, based at the Centre for Deaf Studies, is a community outreach
programme that gives home-based support and information to families of children with hearing loss.

Hi Hopes’ interventionists, of which there are more than a thousand across the country, support families with information about, for example, sign language and other communication skills to give these children ”every opportunity to develop naturally and enjoy the same opportunities as their hearing peers”, she says.

To do this most effectively, she says, hard-of-hearing babies should be identified between three and six months of age. But, according to Storbeck’s research, more than 80% of babies with hearing loss are diagnosed after the age of two.

”This has profound developmental impacts — delaying cognitive, emotional and social development,” says Storbeck. ”There is evidence that hearing babies can recognise their parents’ voices in the womb already, so even at birth deaf babies are at a disadvantage and have missed out on learning and on the emotional connection with their caregiver.”

In the US babies are screened for hearing loss at six weeks, three months and six months as a matter of national policy but in South Africa no such policy exists.

”Here we only refer to an audiologist at an individual doctor’s discretion and honestly many doctors are not aware of the signs to know when these referrals are appropriate,” she says. 

”I’ve heard countless stories from parents in Hi Hopes about paediatricians not referring these babies because they think the mother is being paranoid — delaying the process and setting the child back months and sometimes even years.”

Tumisho wears a hearing aid but also uses sign language to communicate. 

Early signs of hearing loss
Her research indicates that, even without a national screening programme, if doctors in the private and public sectors were more aware of the early signs of hearing loss ”we would be identifying these babies in much higher numbers and much more quickly than we are doing
now”.

Hi Hopes connects with families by word of mouth and the few medical professionals who consistently refer families with babies with hearing loss to them. Since 2006 the organisation has assisted more than 1 700 families in four provinces (Gauteng, Western Cape, KwaZulu-Natal and Limpopo) with support and skills to cope with raising a small child who cannot hear
adequately.

”The beauty of the programme is we come to you in the place you are most comfortable – your home,” says Storbeck. ”Our early interventionists have also been trained in dealing with the emotional trauma these families often go through.”

She says many families feel overwhelmed by the medical terminology and different options they are given and struggle to ”know what the right choice is”.

”We’re unbiased, so we tell our families there is no right choice and we give them as much information and help as possible to make these decisions easier,” she says. ”Imagine being told different and complicated things from an audiologist versus an ear, nose and throat specialist — many of our parents struggle to relate to doctors but we try to empower them with the information and skills to do this.”

Deafness, unlike blindness or many other disabilities, is invisible. ”You can’t immediately see when someone is deaf and this is a large part of the reason why it’s so low on the agenda across the board,” says Storbeck.

”We are trying to raise this visibility and change the way families interact and think about their children with hearing loss — so they no longer feel like victims.”

Fundraising for support
Hi Hopes fundraises to support its work. Storbeck says their activities could be extended with more ”regular and substantial” funding. 

For Millicent, one of the greatest dilemmas was choosing between communicating with her son through sign language or cued speech.

Cued speech is a ”visual mode of communication in which mouth movements of speech combine with physical cues which represent sounds of traditional spoken language”, according to the National
Cued Speech Association.

Storbeck says that about 50% of the families in Hi Hopes choose to communicate with sign language and the other half choose cued speech, but ”there is a growing number of families who choose to use both, so that their kids can decide for themselves which medium works best for them”.

The advantage with cued speech is it allows people with hearing loss to communicate in the languages of hearing people, whereas signing is a unique language for deaf people ”that they can own”, says Storbeck.

”To a hearing person cued speech may look and sound strange but it has an advantage in the hearing world because you’re adapting the language already in use. With sign language, it is the deaf community’s own language, which has been in use for much longer, and requires learning on the part of a hearing person in order to communicate,” she explains.

Millicent and Tumisho use sign language and speech to communicate. 

Signing and speaking
Millicent learnt sign language and uses it — along with speech — to communicate with her son. 

”It was hard to learn a completely new language but it was worth it,” she says.

Tumisho, who attends St Vincent School for the Deaf in Rosebank, can transition between speaking and signing with the help of a hearing aid.

”But sign language suits him best a lot of the time – it’s how he talks with his school friends also,” she explains.

Children stay in the programme until they are three or four years old, but the early interventionists are available to families for many years afterwards.

”Tumisho left years ago but I still ask Hi Hopes for advice. I can’t believe the change in my boy during our first years with them. I never thought my child who they told me was deaf would love to sing and dance the way he does.”

The young mother pauses to reflect. ”He is going to school. I mean, when I first found out about his hearing I wondered if I would be supporting him for the rest of my life. But each year he graduates a year of school I send a picture of him to Hi Hopes, and I’m sure now that I’ll be sending them one every year until he passes his matric.”

 

Bhekisisa

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Amy Green
Amy Green reported on health issues at the M&Gs health journalism centre, Bhekisisa, from 2013 to 2016.

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