March 2019 Sydney Morning Herald

At just a year-and-a-half old Rome Walker is the “funniest kid ever”, cheerful and happy all the time. But in his short life, Rome has already faced many challenges, including diagnoses of profound deafness and cerebral palsy. “We had no idea, we had absolutely no idea,” Rome’s mum Renae Whelan said. “We were like yeah, he was normal, he looks normal, the pregnancy was normal - we just didn’t see it coming, so it was very overwhelming.” Everything changed after Rome was born, and for Renae and her partner Ryan Walker, life became a revolving door of specialist appointments and learning as much as possible about the future for Rome. He was born with congenital CMV, or cytomegalovirus, which affected his hearing and contributed to other issues. “From birth we knew he had hearing problems because he didn’t pass his newborn screening,” Ms Whelan said. “So we went back and we did more testing and it still wasn’t OK and I was in denial. We just kept going back and back and the hearing test kept coming back the same.”

Rome’s hearing gradually became worse, until he finally lost nearly all hearing in his left ear and his right ear began going the same way. “He can’t communicate with us, I know his signals but if someone else was to have him – which no one does because I don’t like leaving – they probably wouldn’t pick up on the signals of what he’s trying to get at,” Ms Whelan said.

Rome WhelanRome Whelan, 18 months, is seen with his mother Renae Whelan and father Ryan Walker, celebrating his new cochlear implant.

But a major breakthrough was made for Rome – the switching on of his first cochlear implant. He had surgery to place the implant, and at Brisbane Hear and Say in Ashgrove, his family and friends gathered to witness the moment the implant was switched on. Grandparents and aunties, and his little brother Cove, just four months old, all waited at the specialist centre in a room specially designed to show families the moment their loved ones realise they can hear once more. “I’ve been coming here for months and I always see [upstairs] where they do the switch-ons and I’m like, I’ll be there one day,” Ms Whelan said. For Rome, it wasn't just his close family watching – Ms Whelan has a following of 40,000 on Instagram where she raises awareness around raising children with profound deafness and cerebral palsy.

 

Rome's FamilyRome's family and friends assembled to watch 

Distracting Rome with toys, his implant was connected to a computer and switched on, pinging a set of simple sounds at different pitches to test his reaction. After a few trials, at one sound, Rome stopped playing and looked up, a serious expression on his face. The moment he reacted, a puppet show began next door, as the specialists work to train Rome to react – hear a sound, look at the puppet show. It’s a way to confirm he has heard the sound, rather than guessing based on a young child's subtle physical reactions. As the testing continued, Rome saw the puppet show multiple times, until the computer had logged enough of his reactions at different tones to create a “map” for the cochlear implant. Mapping the algorithm to set sounds to a comfortable frequency for Rome to hear, the specialists then switched on his brand new implant.

A moment of confusion and nearly tears for Rome, but quickly it passed, and as his parents talked to him, he looked straight at them. For his parents and his family watching on, it was a moment of relief and excitement that one hurdle has successfully been crossed. The "switch-on" for Rome's cochlear implant went perfectly, and now, Rome must learn to hear all over again. In the weeks ahead, there will be plenty of books to be read aloud, conversations to be had and long walks listening to the world around him, for the first time in months. The next steps involve plenty of speech and hearing therapy, work done at the Hear and Say centre with Rome’s parents. And Rome’s extended family will be there to help, all the way along.

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