CHAPEL HILL – This summer we told you the story of three-year-old Grayson Clamp, the first child in the U.S. to receive an auditory brain stem implant, and thanks to a team of doctors from UNC, he heard for the first time.
Len Clamp, Grayson’s father, said in the months since the miracle operation, Grayson has begun learning to talk.
“So he’ll point to his ear so that you’ll tell him what he is hearing, which is just really cool! Clamp said. “He does that constantly if he is hearing something for the first time or something is really loud. Everything is really a teaching moment with him now.”
The proud father said that his son has mastered several words: up, bye-bye, no-no and open.
In April, Grayson received the implant as part of a Food and Drug Administration-approved clinical trial at UNC Hospitals.
Grayson, who was adopted by the Clamp family, was born without a cochlear nerve, which transmits sound information from the cochlea to the brain.
Doctors first tried a cochlear implant, but because he was born without the cochlear nerve, it was ineffective, as there was nothing to stimulate. His family then decided to move forward with an auditory brain stem implant, which had been used for adults but hadn’t been tested for use in children in the United States.
“When we really step back from it, that is what this whole thing has been, is something just extraordinary with the technology, the miracle and the platform to share,” Clamp said.
The procedure requires doctors to implant a microchip in a patient’s brain. The microchip then helps the patient recognize and process sound by electrically stimulating the brain stem.
Dr. Craig Buchman, Chief of the Division of Otology/Neurotology and Skull Base Surgery in the UNC School of Medicine; Dr. Matt Ewend, Chair of the Department of Neurological Surgery at UNC; and Dr. Holly Teagle, Program Director for the Carolina Children’s Communicative Disorders Program, were just a few of the many doctors who have helped to give Grayson the ability to hear.
“There are unbelievably supportive,” Clamp said. “They love to see him just as much as he loves to see them.”
The moment that Grayson heard his father say for the first time, “Daddy loves you,” was captured on film this summer and has since been embraced worldwide.
“It sort of brings into full view what we have seen as sort of a faith journey for our family to him getting to the point now of being able to hear and be more engaged in what is going on.”
The Clamp family makes the trek to from their home in Charlotte to Chapel Hill twice a month to work with UNC doctors. Grayson participates in sound recognition and speech therapy exercises, while doctors also tracking his brain activity as he recognizes more sounds.
Clamp explained that his son can now detect sound at a level comparable to a child with a cochlear implant – between 20 and 30 decibels.
They communicate with Grayson in a method that’s called “cue language” by which he indicates that he wants something and his parents ask him to say what he wants.
“It’s still a very slow process,” Clamp said. “We still fully expect that he will develop meaningful speech, or speech that you and I can understand, and that he will be able to recognize speech.”
Clamp said that doctors’ expectations have been conservative because Grayson’s because his case is unprecedented. They estimate it will be 12-15 months before his son can communicate meaningful speech and connect learned hand gestures with word meanings.
“He’s had to climb so many mountains at such a young age, there’s going to be no end to what he will get involved in.”