A NEW WORLD OF SOUND
Grayson Clamp has lived in a silent world for three years, after he was born without hearing nerves in both ears.
But after recent surgery at UNC, 3-year-old Grayson can now hear a dog barking. He can listen to his little brother beat a drum. He can hear the encouraging voices of his mother and father.
Friday morning, U.S. Sen. Kay Hagan took a tour of UNC School of Medicine’s CASTLE in Durham, also known as the Carolyn J. Brown Center for the Acquisition of Spoken Language Through Listening Enrichment. The groundwork for the center began in 1993, and CASTLE is now following 1,000 children with cochlear implants. Some of those patients are now enrolling as college students at UNC, after receiving implants at 2 or 3 years old.
But Grayson’s case is different, a first in the country. Grayson, whose family is from Charlotte, received an auditory brain stem implant this spring at UNC Hospital and became UNC’s first patient in a FDA-approved investigational device trial. The implant connects to the brain. In surgery, an incision is made behind the ear and the brain is moved to the side to place an electric carrier, 7 to 8 millimeters in length, physically on the brain.
Three to four weeks later, when all is going well, the device is activated. When Grayson heard for the first time this May, he opened his mouth, looked at his dad, Len Clamp, and signaled that he could hear.
“The first thing I said to him was ‘Daddy loves you,’” Len Clamp said, “because that’s what I always say to him.”
Grayson can take off the outer portion of the implant before he goes to sleep at night, but his father said he rarely wants to remove it. His son went from feeling only the vibrations of a cochlear implant with the volume cranked up to actually hearing.
Grayson sat in his father’s lap Friday in a sound booth and listened for high-pitched sounds. Upon hearing the beeps, he placed farmhouse puzzle pieces into their slots.
“Duh-duh-duh-duh-duh-dog,” Len Clamp said, sounding out the word to his fidgeting son. Grayson has to start from the very beginning when it comes to learning his consonants and vowels. His family uses Cued Speech, an alternative to American Sign Language that stimulates language development from signaling every word.
“I want him to be happy,” Hagan said with a smile as she followed Grayson as he darted out of the sound booth. “It’s all about Grayson.”
Grayson ran down the hallways at CASTLE in a Carolina-blue polo shirt. He turned shy as a group of people followed him and his family around, and he placed his hands against the glass door, staring outside. He then took interest in a photo camera, mashing the buttons and staring at his own image on the screen.
UNC is about to perform a second implant at the beginning of September on an 18-month-old girl from Tennessee. More than a dozen children and their families have contacted the university to inquire about the procedure, and Dr. Craig Buchman, the director of UNC’s Ear and Hearing Center, said he hopes to do four or five more procedures before they run out of funding.
“We learned from Grayson. We want to learn a lesson from each child,” said Dr. Matt Ewend, who’s also on the implant medical team and is UNC’s department chair of neurological surgery.
Hagan’s tour of the center included a peek of the toy room stacked with multi-colored treasures for the tiny patients and a look into a classroom where they offer speech and audiology therapy. A UNC speech pathology graduate student was working with children that morning.
Buchman said these children enter kindergarten with their hearing peers, and by third or fourth grade, they no longer need to enroll in special classes at school or receive special treatment.
“If you look at all the children we take care of here, none of them end up on disability,” said Dr. Rick Pillsbury, UNC’s executive director of the W. Paul Biggers Carolina Children's Communicative Disorders Program. “Early intervention is the key thing.”
Hagan and her team walked past a room where a therapist was videoconferencing with a family and their baby from Asheville. The pilot “teletherapy” program is the wave of the future, according to the CASTLE team.
After the tour, Hagan stood in the middle of one of CASTLE’s classrooms, where she was surrounded by parrot and monkey puppets, drawings of airplanes and an art wall with scribbled crayon marks.
She said the National Institutes of Health, which has funded cochlear implant research since the early 1970s, must continue to be a budget priority, and Grayson is a success story that comes from long-term national investment in medical research.
“We came honestly from a position of this wasn’t going to happen at all,” Len Clamp said. “Our journey has been one of pretty much a faith walk. We’ve been overwhelmed with the miracle of it.”