Last updated on Feb 10th, 2021 at 09:01 am
Stefan and Brumilda Kruger, in their mid-30s, were delighted when they found out they were pregnant again. Four years earlier, Brumilda had given birth to Ivan, who was born with club feet and other severe medical conditions. The four years since his birth were difficult. “Ivan was hospitalised more times than we can remember, but despite these challenges, today he is just a normal four-year-old – with glasses. Laughing, playing, reaching his milestones and giving us more joy than we could ever imagine.”
Baby number two
Despite this, or perhaps as a result of the intense love for Ivan, the couple decided to have another child and were delighted when all the scans were normal. “We were ecstatic; our little girl, Kara, was perfect and quickly
slept through the night. She was my angel. I used to keep her in a wrap, close to me all the time. But at 11 months, Kara wasn’t sitting. No matter which exercises I tried with her, she would just throw herself back and refuse to be in an upright position. She wouldn’t eat anything with texture and preferred to have milk out of a bottle.
“Deep down, I knew something was wrong,” admits Brumilda, “But I was in denial after everything we’d been through, life was quiet now − no weekly doctor visits, surgeries, heartbreak, tears or financial stress. I didn’t want things to change. I wanted to hold on to our perfect little girl for a little longer.”
When reality hits
Brumilda decided to go back to work after taking two years off to look after her son. “We thought that sending Kara to a daycare would stimulate her development. When I picked her up the first day, I was called in by the head of the school and told what I already knew, but needed to hear from someone else. Kara was way behind on her milestones. She needed to be evaluated as soon as possible. I just sobbed.
“I eventually made an appointment at the Baby Therapy Centre in Pretoria. Kara was evaluated by several therapists and the report revealed that she was on par with an eight-month-old. She was 12 months old at the time. They ruled out syndromes, but were sure there was something wrong with her ears. We drove straight to our paediatrician who referred us to an ENT.”
Kara was given grommits to reduce the pressure in her ears, but the doctor said he had a gut feeling she was deaf. That day, Kara failed two audio screening tests and again a week later. An auditory brain stem test under anaesthesia was advised.
When the audiologist emerged from theatre shaking his head, Brumilda’s heart sank. “I felt physical pain for my child. I broke down. I could hear my cries echo through the hallway. People passing stared.”
Kara was diagnosed as profoundly deaf, which is defined as being unable to understand speech through hearing – even when sound is amplified with hearing aids. Kara would never be able to learn to speak or live a normal life.
“After we’d had a few days to process our new reality, and time to research and read up about her condition, the idea of cochlear implants became our ray of hope. It was scary and we had no idea what to expect, but one thing was certain – we were going to fight for our daughter. As it turns out, she was the perfect age for cochlear implants (the younger the better).”
A long journey
It took 28 consultations in four months to obtain a correct diagnosis and approval for bilateral cochlear implants. There was also a sense of urgency: If a child has been deaf since birth and they have not heard or learnt a language by the age of four or five, they don’t usually benefit from a cochlear implant. “We had to get Kara implanted as soon as possible,” says Brumilda.
Due to Kara’s weight and age, she had two operations within six months of each other. “We discovered the combined procedures, devices and therapy would cost around R1 million. Although we were on a medical aid, each fund and plan offers different cover. Some pay a portion for this procedue, but most schemes have it as an exclusion. There was no way we could afford it after the medical expenses of the past few years,” says Brumilda.
Fortunately, they were able to secure cover. “I cried the day Bonitas approved Kara’s first implant. In fact, I think I cried more than when we discovered she was deaf. This would change our child’s life forever.”
After the operation
Kara’s first implant was nothing short of a miracle. When it was turned on, she responded immediately with a smile that then turned to cries. It took time for her brain to make sense of all the new auditory input − to process it and turn it into meaningful signals. It’s a process, but it really doesn’t get any better than this.
“The external device needs to be put in a dryer every night, the batteries need to be charged, the covers and cables checked and the spare parts packed every day. School teachers had to be trained, and we even figured out a cool new haircut that helps the magnets stick better. What seemed overwhelming in the beginning quickly became routine and ultimately a very small price to pay for the rewards in return.
“She can hear, she just doesn’t react the way everyone expects her to. It takes time and we need to be patient. It took about two months for her to start mimicking words like ‘nee’ and ‘ja’ and much later she started saying, ‘ma’.”
The second implant elicited no tears, just smiles. And after having no response to hearing tests before the implants, she now reacted to high and low frequencies.
“Kara will be able to go to a mainstream school, just like her brother. This will present new challenges, but ones we will deal with. Most importantly, my daughter will not be separated or labelled. She will be able to do what her heart desires and not be held back by a disability. This makes me so excited for what the future holds.”