Lack of hearing testing deprives scores of kids of quality education

The right to education might be enshrined within the constitution, but it is a right that is not fully fulfilled for most deaf children in South Africa.

Sadly, the prospect of a good education is often lost long before a child has even set foot in the classroom. According to a report by Stats SA in 2012, hearing impairment is the third-highest reported disability in South Africa but identifying that a child has a hearing problem is not as easy as it sounds.

The lack of universal newborn hearing screening (UNHS) in South Africa is the first challenge for children. It results in a late diagnosis of deafness or hearing impairment. There is currently no legislation in South Africa making UNHS mandatory and so it is not standard practice. Instead, the country follows the targeted screening.

International guidelines suggest that screening for hearing loss is done at one-month-old at the latest, and that an early intervention plan be implemented by no later than six months. In South Africa, this can happen anytime after two years old.

An easily missed diagnosis

“Deafness is the last thing you see when you have your baby. It’s got 10 fingers, 10 toes, and you don’t think about its hearing,” says Dr Belinda Birdsey.

Birdsey has a master’s degree in Neurodevelopment, but she is also a mother of three hearing-impaired children. Her personal experience led to her founding Thrive Parent Support Group for families of children who are deaf or hearing-impaired.

“The only time a parent then has it on the radar that something’s up and you might not realise it’s deafness, is when the child is not talking past a comfortable delayed stage. And that typically happens between the ages of two and three years old.”

This was also Birdsey’s personal experience. Her twins, Hadassah and Tahlita, were diagnosed when they were three years old.

“They were about two and a half when I started getting worried. And everybody kept telling me that I was being paranoid. But our closest friends had their first child, literally a week apart from our twins. I couldn’t get over the difference between what my kids were able to do verbally and what their child was doing.”

She talked her concerns through with an audiologist, who told her that all the twins needed was some speech therapy. But that didn’t help.

It was at the end of a visit to Johannesburg when they were about to turn three that the problem became clear.

“We were paying for our accommodation. And I could hear the one crying. She had tried to follow me and gotten lost somewhere in the garden. I could see where she was.  I went outside and shouted her name, and she didn’t turn. I thought well, she’s screaming so loudly, she can’t hear me. So I went right behind her. and I shouted her name with every ounce of possible strength that I had. She didn’t turn. I touched her shoulder and she turned around and she was so happy to find me. At that moment I realised she was deaf.”

The children were formally tested, and their hearing impairment was confirmed.

“It had just taken such a long time to figure out. Nobody else in our space, including professionals, just didn’t see it…wouldn’t think to think of it.”

So began the family’s journey to ensuring the girls got the best chance possible for a good education. Birdsey and her husband resigned from their jobs to move the family to an urban area.

“We took out rent to the place we’d never seen. We just made these huge decisions to get closer to the city so we could get help.”

Within months, she noticed that her youngest child, Eden, was also displaying signs of hearing impairment.

“I remember going to the audiologist and I said to them, I need to do a hearing test with the little one. They’re like you’re paranoid, it’s because of what’s happened, you’re feeling on edge about everything.”

Birdsey says she knew something was wrong, because she noticed that her daughter did not always listen and that she was only saying a few words. She insisted the audiologist test her.

 “They tested her and said to me, everything’s fine. But I could tell they were having trouble with the machine.”

Two days later she tested her at another audiologist, and her fears were confirmed.

“It was a pretty hectic… Four months of finding out that all three of our kids were deaf.”

Learning to sign… Priceless

The family moved swiftly to make up for the lost time to get them on track to be able to communicate.

“We got them all hearing aids, and we started talking with them. But that’s a very long process. Putting hearing aids on doesn’t mean you have to start talking tomorrow. And I just wasn’t going to waste another day, especially with my older twins. So, I also learned some sign language and put them in a school for the deaf so that I could be immersed in that culture and in that language.”

The payoffs came swiftly.

“Three weeks after starting to learn sign language with them, we were going to the shops and it started raining. One started freaking out. I had all three kids, put them all in the trolley, and I needed to get to the shop, So, I used the few signs that I knew. And I asked ‘what?’ And she looked at me because she knew ‘what’ because we had been learning together. And she said, ‘shoes wet.

“I took them off, and we carried on shopping. And at that moment, I realised how priceless that was, being able to communicate with your kid.  Nothing could have been met like I understand you. And you know that understand you.“

The World Health Organization says about 60 percent of hearing loss in children under 15 years of age is preventable.

Making quality education available to deaf and hearing-impaired children begins with them being identified early so that they can receive appropriate treatment and support.