Hearing the call to head to the national spelling bee

C-o-c-h-l-e-a-r. That word, and the device it represents, helped a boy born with profound hearing loss grow into a 11-year-old so talented at spelling that he achieved what once might have seemed impossible: Neil Maes made it to the Scripps National Spelling Bee.

His mother, Christy Maes, said it’s been an amazing journey. “Oh my goodness, it was awesome. I had a pediatrician come up to me who was one of the speller’s moms, who said ‘We’re all advocates for our kids, but what you’re doing is over the top.’ And I don’t think about myself as anything special – just a mama doing what mamas do.”

Neil’s parents knew almost immediately after he was born that he couldn’t hear. The problem was picked up in a newborn screening test. So his family, which lives in Belton, South Carolina, researched the best nearby places for treatment. They chose the Cochlear Implant Program at the Medical University of South Carolina.

Audiologist Meredith Holcomb directs the program. “I think that we are aggressive, meaning we really want people to hear. Some centers are maybe a little more cautious about implanting certain people or certain hearing losses, and we really are trying to do what’s best for the patients. I think we’re doing that well.”

Neil’s mother said he got his cochlear implants just before his first birthday. “Early intervention is key, and time is of the essence. You need to get these in place and get the rehabilitation going,” Maes said.

Holcomb said getting the implants is just the first step in a long process. “It takes a lot of at home therapy and speech therapy to make these implants work well. It’s not something that they turn on, and then all of a sudden they’re hearing and understanding speech. It is day and night work with these parents, and Neil’s parents are a testament to this.”

Neil has cochlear implants on both ears. “It’s an electronic device that has two parts,” Holcomb said. “The internal device is surgically inserted into the cochlea and then a couple of weeks after the surgery, we activate the external device.

“The external device has a speech processor that sits on his ear and a microphone that accepts sound. It transfers that sound, similar to what we hear, into an electronic way of hearing. It sends the signal through the skin via a magnet – there’s a magnet that sits on the outside of his head that connects to the magnet that’s inside his head. When those two parts connect, everything should work and they should be able to hear.”

Neil’s hearing is now in the borderline normal range, Holcomb said. 

He heard some pretty complicated words at the national spelling bee. His parents were in the audience, cheering him on. “The word that he misspelled was polychromatic. And the last one he got right was actinide. He will learn,” his mother said.

Neil’s family made a point of sharing his story while they were in Washington, D.C., for the bee. “We tried to take advantage of opportunities for media and interviews, because we want other people to know that this technology is available, so they can learn about it and make an educated choice about what might be best for their family. And we were hoping that through all of this attention, that somebody will be helped. There are still a lot of people out there who don’t know about this technology.”

More know about it now, thanks to national news coverage of Neil’s story. 

Holcomb said his experience shows how much things have changed for people with hearing problems. “Children weren’t able to get cochlear implants until sometime in the 80s. Before that, their only options were to use super power hearing aids and then to be put in an oral preschool and a school for the deaf that was teaching children how to talk.”

Neil isn’t the only child in his family with cochlear implants. His mother said she and her husband learned they’re both carriers of an autosomal recessive disorder that causes a 25 percent chance of hearing loss in each of their children. Neil’s sister Erin was born with the condition, and thanks to her parents’ experience with Neil, they knew exactly where to go for treatment.

Holcomb said Erin is doing “extraordinarily well,” just like her brother. “She was implanted when she was seven months of age, so she was even younger than Neil was. But they are just an amazing family. If we could bottle them up and send them out to every family we have, I think we’d have more success stories, absolutely.”

Neil is hoping for more success with his spelling, as he gets ready to start sixth grade. His mother said he enjoys reading, which helps. “It was such a good experience, and I would love to go back, but we’re just going to take it a day at a time. We’re going to encourage him to keep reading. He’s excited about what he experienced and would love to go back.”

She said she knows the Cochlear Implant team at MUSC will be rooting for them. “We’ve had a great experience. We love the team, and we feel like they know us. We feel like they’re family. They were up to date on the latest technology. They just seemed to be eager to help. I always have to email with the audiologist whenever we have issues with the technology, and they’re always on top of it and quick to respond and help.”