Isaac’s story

Since their son Isaac was born, Michelle and Simon have been looking for answers.

He had three holes in the heart and a rare condition that causes missing tissue in his eyes. Then he failed his hearing screening leading to a diagnosis of auditory neuropathy in his right ear, where sound information is disrupted between the inner ear and brain. He needed 4 more hearing tests and an MRI, and even then they still don't know if he can hear in his right ear.

“Actually, I think we’re pretty lucky,” says Michelle, a 38-year old kindergarten teacher. “If he had auditory neuropathy in both ears, we’d have absolutely no idea what he could hear and that would be horrific.”

“His audiologist thinks he can hear loud noises of 80 decibels, the equivalent of a lawn mower, in his right ear,” says Michelle. “But if she sets a hearing aid at that level and she’s wrong, it could damage his hearing. We’d love to get him a cochlear implant, which have proved so successful with auditory neuropathy, but we’re in limbo until we have a definitive answer.”

Part of the problem is that the standard tests used to measure hearing in newborn babies do not give an accurate picture in auditory neuropathy. That is why NIRGenie is working to develop new technology that can help.

“If there was a technology that could tell us what he’s actually hearing in his brain, it could have saved us so much heartbreak in terms of knowing what’s going on and being able to plan and move forwards to support him in the best way.”, says Michelle.

EarGenie® will ensure babies born deaf or hard of hearing receive the best devices as early as possible, so they have the best chance of hearing clearly and learning to talk.