"Crazy Magic": Experimental Brain Surgery Lets Boy, 4, Hear | NBC 10 Philadelphia

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"Crazy Magic": Experimental Brain Surgery Lets Boy, 4, Hear

A 4-year-old boy from Montreal came to LA to participate in a clinical trial. He is one of about 15 children across the country to have an auditory implant placed directly into the brain stem.

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    A 4-year-old boy from Montreal came to LA to participate in a clinical trial. He is one of about 15 children across the country to have an auditory implant placed directly into the brain stem. NBC4 was with him during a recent check-up. (Published Tuesday, June 16, 2015)

    The mother of a deaf boy says he can now hear the "birds sing" following experimental brain surgery performed in Southern California.

    Four-year-old Auguste Gareau was the first child to receive an auditory brain implant in California, as part of a clinical trial being conducted at the Huntington Medical Research Institute.

    The day NBC4 visited with Auguste, he was going for a nine-month check-up. He is in many ways a typical little boy, fascinated by his computer games and delighted at the sneaky chance to run through the long hallways at the doctor’s office.

    "He is vibrant. Very illuminated. And he is a charmer," said Auguste’s mom, Sophie Gareau.
    Auguste was born profoundly deaf. Before he was two years old, he underwent two cochlear implant surgeries. Neither surgery was successful, because Auguste is missing the nerve that connects the ear to the brain.

    "When you have a child with a disability, you have to embrace them the way that they are. He was just perfect," Gareau said.

    Then came an invitation from the House Clinic in Los Angeles, for Auguste to participate in a five-year clinical trial.

    "Historically there was not a treatment option for these patients," said ear surgeon Dr. Eric Wilkinson.

    Sophie was hesitant at first. This was not only an experimental surgery; it was experimental brain surgery on a little boy. Still, she and her husband travelled from their home in Canada to California to meet with the doctors.

    "We went to Hollywood Boulevard, and we were sitting in front of Starbucks with this blasting music, and Auguste was sleeping, of course, because he couldn’t hear anything. And I just had this heat wave and it came up and the tears came to my eyes, and I am very intuitive and I said, 'We have to do this,'" said Gareau.

    Until now, auditory brain implants, or ABIs, had only been done on adults, and only when there was a medical need to go into the brain, like to remove a tumor.

    "We are replacing the natural cable, which they are missing, with an electronic cable that takes the sound from the external environment and sends it directly to the brain stem," said Dr. Wilkinson.

    Wilkinson is not only a researcher at Huntington Medical Research Institutes and an otologist with the House Clinic, but also a father. He appreciates that this is a difficult decision for families. “It’s really humbling to have someone come from across the country and put baby’s life in our hands. They are amazing people.”

    Almost a year after the surgery, Auguste has been hearing sounds, recognizing some of the world around him and even, dancing.

    Sophie admits the surgery was “emotionally intense,” but in many ways the hard work has just begun.

    "It’s not like you put it on and ‘It’s a miracle! He can hear, oh my God, it’s a miracle.' The work starts here," said Gareau.

    Auguste spends several hours a week in therapy learning to process all the new sounds, all the new information coming to him.

    "His progress is really taking off," Dr. Wilkinson said.

    While Auguste can now distinguish the sound of his own name, and other sounds, it is unlikely he will ever be able to hear fully.

    "We are all learning sign in the family," said Gareau.

    The ABI has improved his ability to read lips, and hear important social cues, like honking horns and cheering.

    "It’s amazing. Crazy. Just crazy. It is crazy magic. Science and technology," said Gareau.