Nov 2018

A couple from New York say it was “magical” seeing their seven-month-old baby girl, who was born deaf because of a rare genetic condition, hear their voices for the first time after being outfitted with cochlear implants. Video of the precious moment was posted to social media by Rochester’s Mayo Clinic. It shows the infant smile and reach out to touch her mother and father as they talk to her.

Aida Little“Hi beautiful, can you hear me? Its daddy,” her father says as the seven-month old stretches her hand out to touch his face. Next, her mother leans in and says sweet words to her as the child smiles back. “This moment was seven months in the making, it was worth the stress that we went through” said Matt Little.

Aida Little was diagnosed with Waardenburg syndrome one month after she was born, when Matt and his wife Melinda discovered she couldn’t hear. The condition can cause hearing loss or changes in pigmentation to hair, eyes and skin. People with Waardenburg will often have very pale blue or different coloured eyes and distinctive hair colouring – such as a patch of white hair.

The condition affects about one person in every 40,000, according to the National Institutes of Health

A surgical team at the Mayo Clinic gave Aida cochlear implants – which help restore hearing – in October. Melinda Little says that weeks later, her little girl still takes joy not just in hearing her parents speak, but in listening to her own voice. “Every time you put in her ears, she has to sit for a few minutes and listen to herself talk. It’s amazing to see. To us it’s a little change, but to her it’s her whole world.” “She hums,” her husband Matt Little explains. They say Aida will hum to herself and when the cochlear implants are activated, she’ll change the pitch of her humming. Matt Little says the couple has to return with the seven-month-old to the Mayo Clinic every few weeks to have her cochlear implants re-tuned, and that right now she’s not able to hear a full array of sound.

“They started her off at a lower pitch,” he explains. “It’s a lot softer, so it doesn’t scare her.”

Melinda Little, who is a teacher in Syracuse, N.Y., said it’s been a rough few months for the couple. First they learned Aida couldn’t hear, and later she was diagnosed with Waardenburg syndrome.

“I’ve had a number of encounters with deaf children, but once it’s your own child you kind of feel like, ‘what do I do next?’ she says. “In my mind, her whole life went through my mind in a matter of minutes,” her husband adds, describing the moment he first learned Aida was deaf. But the couple says they’re buoyed by research that suggests Aida’s hearing will continue to improve and that eventually, doctors have said, she’ll be right on par with other children her age. “They tell us this is her new birthday for her ears,” Matt Little says.

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Here is a link to Deafblindness support and information.
They are based in Western Australia and supported by Senses Australia.

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