June 2019 Kidspot
When Telarni Wilson and David Lehfeldt were expecting their first child, Mum endured a normal, healthy pregnancy. The usual morning sickness in the first trimester, and then smooth sailing until their son Wylder was born. But in an unfair turn of events, Wylder’s first 13 months of life have been filled with heartbreak and struggle. After a routine hearing test at the hospital, while Wylder was just days old, his mum and dad were told some news they weren’t expecting: their little boy was deaf. “Both David and I were very calm and taking in all the information being provided to us, which meant we didn’t have much time to react,” mum Telarni said. “The audiologist who did our testing at Queensland Children’s Hospital was quite surprised at how accepting we were of it. I don’t know if it was shock or just both of us trying to process what was being said.”
But it didn’t take long for reality to sink in and the worries of what might come for their baby boy began to make their way through. “Once we left the appointment, we were both silent driving in the car. I started crying. I didn’t really understand or ever think this was a possibility. We went to lunch and Dave called his dad to tell him what was going on. He walked away from the table and I just saw him crying on the phone. It just suddenly hit us both. We were both very confused. We didn’t know anyone who was deaf, especially profoundly deaf.”
When a parent is told their child is ill, they often blame themselves. Did I do something wrong? And for Telarni, it was no different. “I kept thinking back to my pregnancy, asking myself if I could have done something different to avoid this,” she admits. “Both of us have no history of hearing loss in our families, that we know of, besides old age.”
For Wylder, deafness had come from being deficient in a particular protein, which meant Mum and Dad got the answers they needed to get Wylder treated. “We were the lucky ones who were able to receive a cause to Wylder’s deafness, Connexin 26. This meant Wylder lacked an important protein that is needed to allow cells to communicate. As he didn’t have enough Connexin 26 protein, the potassium levels in his inner ear became too high and damaged,” his mum says.
“It was such a surreal thought that this perfect, brand new little baby couldn’t hear our voices telling him we loved him.”
While their first days following diagnosis were filled with confusion, uncertainty, fear, and plenty of sadness, Telarni and partner David were grateful help was readily available. “The system that is in place here in Queensland is one that is heavily geared towards getting children with hearing loss the best access to communication as quickly as possible,” says Telarni. Telarni and David came across a not-for-profit organisation called Hear and Say, which focuses on developing speech and listening skills for children with hearing loss. It was through their help that they were able to give Wylder the best chance in life – together with a cochlear implant.
At nine months old, Wylder was fitted with a bilateral cochlear implant and just 10-days later he heard for the first time. “He was so chill at the time they switched it on. You watch the YouTube videos of children hearing for the first time and you see this textbook reaction of amazement. Wylder wasn’t like that. He turned and grabbed his head like: ‘what was that’? Then went straight back to playing with the toys,” Telarni recalls. “There were moments when he was frightened by the sounds, but that faded quickly and he was just again, so chill."
Now witnessing their baby boy communicating and responding like any other child his age, Telarni and David admit they are also just as chill as Wylder at that moment. “Looking back, it was probably naive to have had an irrational fear as there are many ways to communicate. But Dave and I both had no experience in the deaf community and we were scared that Wylder wouldn’t be able to communicate effectively with everyone, or participate in the world we have always been a part of. Listening to the birds in trees, the sound of the fan, talking to family, singing … all the things that we take for granted now were all but guaranteed never to happen for our boy, unless we looked into technology and support that could help.”
Telarni and David hope by sharing their story about their precious boy, they will give hope to other families who might be experiencing the same sort of news they did when Wylder was just days old.
“Having your profoundly deaf child responding, listening, learning and talking is amazing. Every day we think about how lucky we are to have access to the Cochlear Implant technology and to a centre like Hear and Say. What is an absolute game changer is he can hear us tell him we love him - and the smile that comes off of that is priceless.”