Oct. 30, 2009— -- From the moment Joshua Sutterfield's son was born, he knew that something wasn't right. One-week-old Devon has never cried, and now doctors can't tell him if Devon ever will.
"Right when he came out he was squeaking when he cried. We thought he might have a little something that they didn't suction out," said Sutterfield, 24, of Cullman, Ala.
But some X-rays and tests later, doctors came to Sutterfield with some bad news. Devon's vocal cords were paralyzed. The squeaking noise was a stridor, a sound of air whistling through a blocked throat.
The vocal cords aren't just for speaking they are part of the complex system that affects a host of functions including crying.
Vocal cords, or vocal folds as doctors call it, affect how we speak, breathe and swallow – they close to let us swallow, they narrow to let us speak and open to let us breathe, explained Dr. Steven Goudy, assistant professor of otolaryngology at the Monroe Carell Jr. Children's Hospital at Vanderbilt in Nashville, Tenn
"Because you do have two vocal folds it could be one not working or both of them not working," said Goudy. "We see it several times a year, but it is still very rare."
Sutterfield said each time Devon tries to cry, he begins to have breathing problems and sometimes turns blue.
"The further it goes the less cry you hear," said Sutterfield. "When he'd cry -- he'd cry so hard that he'd lose oxygen."
Sutterfield and his fiancée Jody Woods, 20, are hoping the doctors at the Children's Hospital in Birmingham will find some answers for baby Devon. ABC affiliateABC 33/40 in Birmingham, Ala., first reported the family's story.
"As of right now they don't know what causes it. They're saying it might be many different things," Sutterfield said.
Devon is one of the one in a million children who are born with paralyzed vocal folds for unknown reasons, according to Dr. Christopher Hartnick, a specialist in pediatric otolaryngology at the Massachusetts Eye and Ear Infirmary in Boston.
As the Sutterfield family soon found out, the rare condition can also threaten a baby's survival.
Goudy said usually when the vocal folds are both paralyzed they're very close together and "it's basically like they're running a marathon because they're breathing through something that's like a straw."
Instead of a Cry, Devon Turns Blue
The Sutterfield family is keeping Devon at the hospital so he can receive oxygen as needed until doctors decide on a course of action. Depending on how his vocal cords were paralyzed Devon may be talking within a year, or may never really regain his voice at all.
How Devon's vocal cords became paralyzed may also determine how doctors treat him.
"It can be hard to hear them, but the bigger issue is to make sure they can breathe and feed," explained Hartnick.
Between 35 percent and 50 percent of all cases of vocal fold paralysis in infants can be explained by doctors, said Dr. Michael Pitman, director of the laryngology division at the New York Eye and Ear Infirmary.
"There are a number of disorders that cause the brain to push down a little pit and it pulls on the nerves going to the vocal cords," said Pitman. Other situations, such as a congenital heart problem, or nerve damage from birth can also lead to paralysis of one or both vocal folds.
Yet roughly half of all children with paralyzed vocal folds are classified as having congenital vocal fold paralysis -- meaning there's no known reason for it, according to Hartnick. "Around 60 percent of the time these children will recover in the first year of life," he said. In those cases, the damaged nerves leading to the vocal fold either slowly repairs itself or whatever was blocking the nerve is remediated.
As doctors try to find what happened to Devon, the first goal is to keep him eating and breathing -- which may call for a tracheotomy.
While a tracheotomy may save his life, doctors warn it might interfere with his learning to speak.
"There are concerns about tracheotomies in small children's language development: they can vocalize, but for short periods of time and that's the problem," said Dr. Priya Krishna, assistant professor in the department otolaryngology at the University of Pittsburg School of Medicine.
Living With a Tracheotomy?
Krishna said tracheotomies can be risky in small children for other reasons. "If they put a tracheotomy tube in the parents would need special suction equipment and humidification to make sure the tube doesn't get clogged up -- that can kill a child too," she said.
Depending on his diagnosis doctors may also surgically open Devon's vocal folds -- allowing him to breathe but making it difficult to speak loudly or swallow liquids.
For now Sutterfield commutes the 50 miles between his home in Cullen and the Ronald McDonald house where Devon stays with Woods in Birmingham.
On top of the couple's medical problems Sutterfield says he has been evicted from his home, and recently had his car repossessed.
Sutterfield installs mobile homes for a living and can't find work if the weather is not good.
"I'm hoping there are people out there who understand what we're going through," said Sutterfield. "It's not like we're happy to be asking for help -- but sometimes you need to."
To read more about the Sutterfield family, or contact someone to help, visit the ABC3340 Web site.