3 days ago
Generation ROC: 1st grader's hearing loss inspires mother's advocacy
ROCHESTER, N.Y. (WROC) — Like any other kid who wakes up in the morning, Lyla Russell gets dressed, eats her breakfast and brushes her teeth. One extra step for this special first grader—she puts on the processor for her cochlear implant.
'It feels great with my processor,' Lyla explains when asked how it feels to hear through both ears again.
Lyla has congenital cytomegalovirus—or cCMV—a virus that passes from mother to child during pregnancy and can damage the developing auditory system. Her parents say they were initially confused by the diagnosis.
'My first reaction to that was — I had a lot of various emotions. I had never heard of congenital CMV, I had absolutely no idea what it was,' says mom Kara Russell. 'As a mother of three children never hearing about that I was sad, I was angry, I was concerned.'
CMV infections are the leading cause of non-hereditary hearing loss at birth, according to resources by the National Institutes of Health, accounting for roughly 10 percent of cases.
While the infection only affects Lyla in her left ear for now, her hearing could eventually fade in her right ear too. She's worked hard through all her mental fatigue and confusion to share her bright smile with the world.
'It's a lot of work. Her brain has to work very hard to get that hearing pieced together from her processor side, but since [getting the implant] it's been like night and day. She'd been going through a lot—some behavioral issues, some academic issues, she was receiving speech services,' explains Kara.
'We really didn't know what the root cause of it was, but then when we got the confirmation of her diagnosis and hearing loss, now with the cochlear implant it's been a huge improvement,' she continues.
'This is hard work for me. … To do everything with my processor,' Lyla adds.
To better understand cCmv, Kara reached out to the National CMV Foundation. Her passionate search for information and ways to help other families lead to her being appointed as co-chair for the foundation's New York alliance program.
'Raising awareness, talking with other parents who have recently had the diagnosis of congenital CMV, speaking to legislators,' Kara explains of her role. 'I know how scary that can be. I know how desperate I was to find somebody that had heard of it and who had also gone through that experience as well.'
'I really didn't want to ever hear another mom say, how come nobody told me,' she continues.
For National CMV Awareness Month in June, the foundation is highlighting two bills for New York to consider: one to ensure pregnant patients are given information about CMV and the other to ensure all newborns are screened for the infection.
Lyla's perseverance inspires her family every day to push forward so every kid like her gets the help they need and to see themselves out in the world.
One way her two siblings have rallied behind Lyla is drawing cochlear implants on their toys to make sure she never feels left out.
'She started noticing dolls. She said how come my American girl doll doesn't have a cochlear implant? How come I can't find a Barbie that has a cochlear implant? I said these are really great questions,' Kara explains.
She says she hopes in the future, kids like Lyla can see clearly every day that they're not alone.
'Yeah, I'd like it a lot. If a kid with a processor was, like, in a magazine,' Lyla says.
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