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Charlotte boy hears for the first time after surgery

By Jessica M. Morrison
jemorrison@charlotteobserver.com

Grayson Clamp’s face lights up as he hears his father’s voice for the first time in a video shot by UNC Health Care.

The 3-year-old adopted son of Charlotte residents Len and Nicole Clamp recently became one of the first children in the United States to receive an auditory brainstem implant – a device that restored his sense of sound.

Grayson was born without cochlear nerves, the sensory pathways that deliver sound signals from the inner ear to the brain. Without them, his world was silent. Now a child bathed in sound, Grayson and his family have been overwhelmed by the outpouring of support.

Last month, a medical team at UNC Health Care surgically implanted electrodes on Grayson’s brainstem bypassing the need for cochlear nerves. He was selected for the clinical trial, one of the first of its kind in the U.S., after a cochlear implant was deemed unsuccessful. Grayson is one of approximately 100 children in the world equipped with an auditory brainstem implant.

Video shot by UNC Health Care shows Grayson’s surprise as he hears his father’s voice for the first time during an auditory process known as mapping that occurs once the implant is activated. Grayson’s eyes widen as his father’s words – “Daddy loves you” – are picked up by the implant. “I’ve never seen a look like that,” Clamp said in a video interview with UNC Hospitals. “I mean, he looked deep into my eyes. He was hearing my voice for the first time. It was phenomenal.”

Dr. Craig Buchman, director of the UNC Ear and Hearing Center, led the team that performed Grayson’s surgery. The activation of the implant, seen in the video, occurred three weeks ago.

“We’re bringing the potential for hearing to a child who can’t hear and had no other options,” Buchman said in a video interview with UNC Health Care. Seeing Grayson’s response to his father’s voice brought this medical team a feeling that they had changed the world in some way.

Joanne Cagle, Grayson’s maternal grandmother, said her daughter Nicole was caught off-guard Thursday when national news crews showed up at her son’s follow-up appointment in Chapel Hill.

“Nicole called me and said, ‘Mama, what is going on?’ and I told her, ‘Honey, this thing has gone viral,’ ” said Cagle, of Williston, S.C. “We weren’t expecting it. We live in a small community where everybody knows everybody. It’s been humbling.”

Grayson came to the Clamps as a foster child when he was just 6 weeks old.

They knew he had hearing loss, but they didn’t know how much because he was an infant, said Alexis Clamp, Grayson’s paternal grandmother. The couple, who had fostered medically sensitive children before, decided to adopt Grayson when he was 10 months old. They have one biological child, 2-year-old Ethan.

“I have four grandchildren, and they are all special,” Cagle said. “But he is just as special or more because he has had to fight for everything – to learn to walk, to sit up. He had to fight so hard.”

Watching the video of Grayson go viral online has been exciting for the family, but it doesn’t compare with the experience of seeing him respond to sound for the first time.

“He’s hearing sounds, but he doesn’t know what to do with them yet,” said Alexis Clamp, also of Williston. “We’re a very big, very close-knit family, and we are thrilled to death.”

Some deaf people have criticized medical advances that have allowed hearing, arguing that deafness is not a disability. The modern use of devices to aid or restore hearing has been a point of contention in a movement to preserve “deaf culture.”

The FDA approved the first clinical trials of the auditory brainstem implant procedure for children in 2012. The procedure has been available in the U.S. for adults since the late 1970s, but it was only possible overseas for children like Grayson until now.

The auditory brainstem implant clinical trial program at UNC Health Care is one of three in the country, said Robert Shannon, scientist and research director of the auditory brainstem implant program at the House Research Institute in Los Angeles.

The original implants were developed for use in adults who had lost their cochlear nerves following tumor removal. This success led an Italian researcher to attempt the same procedure in children born without cochlear nerves.

Once the implant is in place, it takes many months of tweaking to get the sound just right, Shannon said. “This is a very specialized thing that should be done in centers like (the House Institute) or the one in North Carolina that know how to work with these children to give them maximum benefit.”

A service dog is being trained for the Clamps to assist with Grayson’s stability. Cagle is considering a fundraiser to help the family pay for the dog, which is expected to cost around $14,000 out-of-pocket.

Morrison: 704-358-6194
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