‘MY LITTLE BOY WAS BORN DEAF
LIAM’S DIAGNOSIS SHOCKED MUM MEGAN, BUT SHE KNEW WHAT TO DO
Megan Marotti watched on as a nurse attached pads onto her baby boy Liam’s head. The newborn was having his routine hearing test and, even though Megan was profoundly deaf in one ear and severely deaf in the other, her condition wasn’t genetic. She’d been a premature twin and her hearing impairment was put down to that.
“My older son Josh had no problems with his hearing test and we weren’t expecting there to be any with Liam,” Megan, 37, tells New Idea.
But after the first test, the hospital wanted to do another. And then another.
“They kept saying there was probably fluid in Liam’s ears, which is why he wasn’t responding to most of the sounds. But at that age, it’s hard to do the test to check for fluid,” she recalls.
Megan and her husband, Nick, 43, from Hope Valley in SA, were then asked to return to the hospital with Liam in eight weeks. In the meantime, Megan tried seeing for herself if Liam could hear, but she admits her experiments were by no means definitive.
“I’m sure he could sense me and even if you are deaf, you
‘I AM LUCKY I COULD GIVE LIAM EVERYTHING HE NEEDED’
can still hear noise,” Megan, who has a cochlear implant in one ear and wears a hearing aid in the other, explains.
When Liam was diagnosed with bilateral hearing loss in July 2020, it was a huge surprise. The parents were told their son had Pendred syndrome, a rare genetic condition characterised by hearing loss in both ears. It was most likely what Megan had as well.
“I was in shock,” says Megan, who had believed, up until that moment, that her hearing problems had no specific cause.
“I felt guilty. This was on me. There was a 50/50 chance of me passing it on and I hadn’t known I even had it.”
Thankfully, it was
a feeling that didn’t last.
“It quickly dawned on me that [my condition] hadn’t impacted my life negatively. I was also in the lucky position that I could give Liam everything he needed,” Megan says.
As well as having lived the experience herself, Megan also works at South Australia’s sensory assistance organisation, Can:do 4Kids. It was a service that supported Megan as a kid.
“That week, Liam started with a speech therapist,” Megan shares. “The doctors said his hearing could deteriorate and I knew early intervention to develop his speech was important while he has access to all that sound.
“I also knew we had access to everything Liam needed, but the challenge for many people is that they don’t even have awareness of these things. That needs to change.”
Liam was fitted with hearing aids at 8 weeks old, which was more of a challenge for his big brother than for him.
“I have a hearing aid and then Liam got them, so of course Josh, who was only
2 at the time, wanted them. We had to make pretend ones for him!” Megan says.
Liam, now 22 months, is loving speech therapy and is progressing well.
“There’s so much technology to help us,” Megan says, citing things like her shake-wake alarm clock, which vibrates her pillow to wake her in the morning.
“I also have technology on my phone that goes straight to my implant, so any background noise is streamed out. Josh is a great helper, too, and always tells me the minute he hears Liam cry. I often joke he is my little hearing dog.”
With the right support and a family that understood, Megan never had any issues with her condition growing up, and she’s determined to provide the same for her little boy.
This year, March 1 to 7 is Hearing Awareness Week, and Megan also wants to let people know that the help is out there.
“I’m so lucky I had it all,” she says. “Liam will have it too and I know he is going to be fine.”