Joey's joyful noise


by Mary Loftus | Photography by Jack Kearse

The cheerful chatter of children at recess fills the playground at Kennesaw Charter School, where Joey Finley, 8 years old and freckle-faced, sits atop a large yellow tube—King of the Slide. Then he's caught up in a game of tag, a blur of boundless energy in a short-sleeved navy shirt and khaki pants.

"I never thought I'd be so happy to see my child be completely average," says his mom, Melanie Finley-Ellis, a volunteer at the charter school, as she watches her son play.

Not so long ago, Joey would have been sitting on the sidelines. When he did talk, which wasn't very often at school, his voice came out as a hoarse croak. "His textured, Janis Joplin voice," his mom calls it.

Video from that time shows a shocking disconnect—a fresh-faced boy in a chair at the Emory Voice Center speaking with the hoarse, gravelly voice of an elderly man.

I was pretty used to it, Joey says now. "But it was hard to talk. It was hard to say certain letters."

The path from there to here—or as Joey calls it, from OV (old voice) to NV (new voice)—wasn't easy for his family, his doctors, or Joey himself.

Joey's first hospitalization came when he was 2 months old. When he wasn't eating, he was switched to soy formula. As a toddler, he continued having sporadic difficulties with speaking, swallowing, and breathing. Doctors thought it was asthma, or perhaps a vascular condition.

"When he was 4, he started complaining that it hurt to talk," his mom says. "You could see the muscles in his neck tensing and showing strain when he tried to speak."

After years of visits to a few different pediatricians and ear, nose, and throat specialists, Finley-Ellis was desperate to find out what was wrong. Joey had had an MRI and CT scan, but the results came back normal.

Then came the turning point.

On a trip home from one of his hospital visits, she realized that her son in his car seat was choking on the crackers and juice he had gotten in the emergency room.

"I pulled the car over and called 911, then was doing mouth sweeping trying to get him to breathe when the paramedics showed up," she says. "They wanted to take him back to the ER."

But she insisted that they take Joey elsewhere—anywhere else—and decided that she wasn't going to leave until the next doctor figured out what was wrong. "I was at the end of my wits," she says. "I wanted someone to tell me how to help my child."

The diagnosis

Joey ended up at Children's Healthcare of Atlanta at Egleston and, ultimately, Emory otolaryngologist Steven Sobol examined him.

"When children come in with a hoarse voice and problems with breathing, that's a light bulb," he says. "It's papillomavirus unless proven otherwise. And my role is to protect the airway and get the child breathing."

Recurrent respiratory papillomatosis (RRP), a rare disease in which small growths form in the upper airway including the vocal cords, is caused by human papillomavirus (HPV), which infects the skin and mucus membranes and often lives in the cervix.

While most women with HPV have children without complications, some will pass the virus on to their babies during birth. About 2,000 children get RRP every year.

For children like Joey who do develop the disease, it can be life threatening: the wart-like growths caused by a flare-up of the virus can block airways.

And while laser surgery can remove the papillomas, they often grow back while the disease is active. Joey has had 62 procedures, 16 of which were surgeries performed by Sobol. "This disease tends to show itself in the first few years of life, and the younger you are when you first get the symptoms, the more difficulty you seem to have," he says. "Initially, Joey had a fairly rough course."

Because the boy had had so many surgeries on his vocal cords in such a short time—having tubes put down his throat, going into the operating room every few weeks, and developing some inevitable scarring—his voice was constantly in flux and never had a chance to stabilize. In effect, he lost his ability to speak.

So Joey started using his "false" vocal cords, squeezing together the tissue above his actual vocal cords.

 "When you do that, the air vibrates the false vocal folds, and you get a low, husky voice," says otolaryngologist Adam Klein. "It was a stable voice, but not one that a 5-year-old should have had. Joey subconsciously turned to this because it's the only voice that would reliably come out."

Finding normal

Klein and Edie Hapner, of the Emory Voice Center, were enlisted to help Joey regain his normal voice.

Hapner, director of speech-language pathology, vividly remembers the first time she met Joey—this adorable little boy who had the croaking voice of an 80-year-old man.

"We got a normal voice out of Joey the first time we saw him," Hapner says. "He is so smart, it was just a matter of teaching him the difference between what it sounded like and felt like to use his actual vocal cords."

But Joey didn't embrace the change immediately, choosing instead to switch back and forth for a while. 

"He would say, ‘I have two voices, my NV [new voice] and OV [old voice],' " Hapner says. "He didn't want one to be called better than the other.">

She used fun, silly exercises such as blowing raspberries and lip trills to encourage Joey, all the while applying the physics of tube resonance to strengthen and exercise his voice.

"Tubas and clarinets use tube resonance," she says. "We are just playing with the instrument inside our bodies." 

Vocal folds, or cords, are vibrating valves that come together several hundred times a second to create pulses of sound with the rush of air from the lungs. Larynx muscles adjust the tension to create an individual voice's pitch and tone: women's voices are higher at 200 to 230 hertz while men's are lower at 100 to 120 hertz. 

Young boys have even faster moving cords and higher pitches, resulting in the angelic tones that comprise the Vienna Boys Choir.

By using video stroboscopy—taking pictures of the voice box with a camera attached to an endoscope hooked to a strobe light—Hapner and Klein were able to see Joey's vocal cords at work. They were also able to see the BB-shaped papillomas that were interfering with his ability to speak.

Goodbye, frogs

Luckily for Joey, his disease has slowed down considerably in the past few years. He still has to have scopes, but his last surgery to remove a papilloma was in December 2008. "He went from having them removed every few weeks to going a year and a half," says Finley-Ellis. "Joey calls them frogs and tells Dr. Hapner that she took his frogs away."

The first time Joey got in trouble for talking too much in school, Finley-Ellis called Hapner, and they both started crying.

"His whole personality changed when he got his voice," Hapner says. "He always had that cute little face, but in terms of being a social creature, he wasn't. Once he got his voice, he started singing in music class, playing with friends, doing gymnastics."

Hapner's office at the Voice Center is filled with frogs—stuffed frogs, plastic frogs, ceramic frogs. 

"Joey and his mom bring me a frog every time they visit," she says. "Thank God for small children who heal so well, good surgeons, and dedicated mothers. He can't even do the Old Voice anymore. He doesn't remember how."

What Joey can do is play, and sing, and laugh, and talk too much to the boy who sits at the table next to him in class. He cheers on his favorite driver at the Atlanta Motor Speedway. He pesters his 6-year-old sister, Keri, and plays ball with his dad, Mark. And he makes up strange mathematical formulas about dogs and cats.

"We have four cats: Radar, Lola, Monster, and Iggy," he says, taking a break at a picnic table under a tree on the playground, sweat dripping down his flushed face. "Having four cats is equal to having one dog."

Then he's off, an 8-year-old boy with an 8-year-old voice, part of the glorious symphony, raising a joyful noise into the bright blue sky. 


A troubling virus, a promising vaccine

The human papillomavirus (HPV), which causes recurrent respiratory papillomatosis (RRP), is surprisingly widespread: about 20 million Americans are currently infected with HPV, according to the CDC, and another 6.2 million people become newly infected each year. At least half of sexually active men and women acquire HPV at some point in their lives. The virus, which can lie dormant for years, is a primary cause of cervical cancer. The CDC now routinely recommends the HPV vaccine Gardasil for 11- and 12-year-old girls, as well as anyone under age 26 who has not had the series of shots.
"By giving the vaccine to adolescent girls, there is the hope of creating a herd immunity as we go into the next generation," says Adam Klein, an otolaryngologist at the Emory Voice Center. "We expect this will greatly diminish cervical cancer and cases of RRP."

The Emory Voice Center

 Autographed CDs from Peter Gabriel, Lauryn Hill, and Coldplay line the walls of the waiting room of the Emory Voice Center at Emory University Hospital Midtown—all high-profile patients who have received help here since the center opened in 2003. Directed by Michael Johns III, the center treats patients with ailments including voice strain, vocal cord nodules and polyps, Parkinson's disease, swallowing disorders, and throat and neck cancers. 

A dimly lit room with marbled walls and a Zen rock fountain is designed for patients, such as those with spasmodic dysphonia, who receive regular Botox injections. With more than 450 Botox patients who have shots in their necks every three months,
"we thought a calm room was the least we could provide," says speech language pathologist Edie Hapner.  

The center also has offered head and neck cancer screenings at the Atlanta Motor Speedway and a vocal health seminar at the Atlanta Opera Center in honor of
World Voice Day.


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