ROUND ROCK, Texas (KXAN) — Baby Elise could feel her father’s warmth. She could see her mother’s smile. But something was missing.
“We went from shock to immediately, what do we need to do?” said her mother, Jill Bradshaw.
Elise was diagnosed with CHARGE syndrome, which in her case left her profoundly deaf due to missing auditory nerves in the cochlea.
“Her world was smaller. Things that were happening left and right weren’t necessarily something she was aware of,” said Bradshaw. “They said they didn’t see the nerve and that she wasn’t a candidate for cochlear implants.”
However, there was another option, an auditory brainstem implant. The Bradshaw’s traveled to Massachusetts General Hospital for the procedure. Massachusetts Eye and Ear Infirmary and Mass General doctors did the surgery together, as well as a specialist from Italy. She was the first infant in the United States under the age of one to have the procedure. One week before Elise’s first birthday, the family traveled back to Boston to activate the device. The activation went according to plan, and Elise heard sound for the first time in her life.
“She did amazing that first day of activation, and then the subsequent day in the hearing booth,” her father Jason Bradshaw said. “When she was responding to the various frequency ranges in the speech spectrum, I was just truly amazed. We had data that said, ‘hey she’s actually hearing these different frequency ranges and responding to each one.’ So, we know her brain is getting the information.”
“I just became stupidly happy! I couldn’t stop smiling,” said Jill.
As for education, the Bradshaws say Elise is lucky. Live Oak Elementary has a program uniquely designed for deaf children. Of the 550 students enrolled at Live Oak Elementary, roughly 60 are either deaf or hard of hearing. Her parents are teaching her Signing Exact English (SEE), which is a sign language system that represents literal English.
“Now some of those dreams, careers, might be an option for her,” said Jill.
The road ahead will require hard work, but so far Elise has proven to be a fighter.
According to the CHARGE Syndrome Foundation webpage, CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9,000-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child.