Vanessa Reyneke, a Project Coordinator in the General Linguistics Department at Stellenbosch University, and her husband, Johan, have embarked on the ambitious goal of raising R300 000 to help their two-year old Deaf daughter obtain two cochlear implants simultaneously.
A cochlear implant is “a small electronic device that partially restores the hearing function of a damaged inner ear". While hearing aids amplifies a sound, cochlear implants fulfill the role of the inner ear to deliver sound signals to the auditory (hearing) nerve of the brain. An implant does not restore normal hearing, instead it can give a Deaf person a useful representation of sounds in their environment and help him or her to understand speech.
Medical aid schemes only pay for one cochlear implant per individual per year and operations last between four to six hours. In a bid to save their young daughter from undergoing the trauma of major surgery two years in a row, the family has decided to take the bold step and have both cochlear implants inserted during one operation. Also driving the urgency is the fact that Karli's hearing is deteriorating by the day.
With her operation scheduled for May, the family now only have six weeks left to raise R300 000 to cover the implanting of the second device as well as the hospitalisation costs.
Vanessa explains that the family first noticed that all was not well with the little girl's hearing when she was just short of 4 weeks.
“We started noticing with growing concern that Karli did not react to the loud barking of the dogs or any loud noises," says Vanessa who is also Deaf.
Aware of what this might mean, the Reyneke's took the nearly one month old Karli for tests. It confirmed what they had suspected - Karli had bilateral moderate-severe to profound sensorineural hearing loss, a complicated term for profoundly deaf.
At two months Karli was fitted with tiny, pink hearing aids. “From the very start we were committed to communicating in both South African Sign Language and in spoken word. She would react when you called her name and was able to tell us that she could hear sounds like the doorbell ringing or a knock on the door."
And then, three months before Karli's second birthday, the Carel du Toit Centre received a donation of brand new top-end technology from the Hear the World Foundation. Not only was it the newest, it was also the best and the first choice of hearing aids for children across the world. And Karli was one of the select few to receive this gift.
“The hearing aids allowed Karli to hear both high and low frequencies better and made it possible for Karli to expand her vocabulary in spoken language, along with her sign language. We were extremely excited about what this would mean for her."
However, a few weeks down the line, Karli experienced a build-up of wax in her ears and developed a high fever. She was diagnosed with severe middle ear infection and the doctor advised that the best way to treat it was to put emergency grommets in, to help with draining the fluid build-up in the middle ear.
“A lot of fluid was still coming out of her ear long after the grommets had been inserted. Once her ear healed, we put her hearing aids on again, that's when we realised she couldn't hear us when we spoke to her, even when she was near us. We weren't sure whether the middle ear infection had worsened Karli's hearing loss."
“After the middle ear infection, we took Karli for another test and it was confirmed that she had lost the ability to hear as she did, before she fell ill. We were devastated because the hearing aids received as a gift was no longer effective for her. It became clear that we had to seriously consider the procedure for cochlear implants."
All the members of Vanessa's family are Deaf, and so they have a strong Deaf culture in their home. They are proud that Karli is already proficient in South African Sign Language.
“It remains a difficult decision to subject Karli, who is still so young, to such a big operation, but we know that a cochlear implant may help her to hear other sounds in her environment and enable her to hear spoken languages, which we believe will give her more opportunities in life."
“Like every parent out there we want to give our daughter a good quality of life. We would like for her to have the chance to attend a mainstream school, where she will interact with hearing and Deaf persons so she can function in both worlds."
In January, the family launched the # Hear Karli Hear # fundraising campaign on the ADDaBIT fundraising platform. Since then, they have raised R34 450. However, this still leaves the family short of R264 550.
The R300 000 will only cover the initial major costs. Once the device has been fitted, Karli will need to attend sessions to train the brain to understand the sounds heard through the cochlear implant. She will have to go for weekly speech therapy sessions and audiological evaluations. On top of that, there is also the cost of maintenance of the devices such as replacing batteries, filters, or the implant processor cable if it becomes damaged.
“Research conducted by audiologists suggest that Deaf children from birth to 11 can wait to have a cochlear implant, but there is also a lot of research that shows that the earlier a child obtains a cochlear implant , the earlier they can be exposed to and develop spoken language."
If you are able to contribute towards the costs of helping Karli obtain cochlear implants simultaneously in both ears, you can visit https://addabit.com/fund/hearkarlihear to make a donation.
Photo: Vanesssa Reyneke (far right) with her daughter Karli and her husband, Johan. The family is trying to raise R300 000 to help their two-year old Deaf daughter obtain two cochlear implants simultaneously and prevent her hearing from deteriorating any further. (Supplied by the Reyneke family)