Surgeries a Breath of Fresh Air for Teenager Finding His Voice
Jacob Marshall is 19 years old and he has already had more than 36 surgeries. And it's likely he will need many more.
Marshall, a sophomore at UW-Platteville this fall, suffers from a rare condition called recurrent respiratory papillomatosis, a disease that affects only three to five people out of 100,000.
Small benign growths grow and re-grow on Jacob's larynx, in and around his vocal folds. When the growths get too large, they begin to affect his ability to speak and breathe.
"It's a really irritating disorder, because it comes back when it wants to," notes Dr. Seth Dailey, the UW Health otolaryngologist currently treating Jacob at University of Wisconsin Hospital and Clinics. "And there's some evidence that if you get it early, it's more aggressive."
For Jacob, a familiar cycle defines his reality: the disease recurs, the nodules grow, and he and his family travel from their home in Montfort, Wis. to Madison, where the team of experts at UW Hospital and Clinics' Ear, Nose and Throat (ENT) clinic treat the nodules using a laser.
The procedures give Jacob anywhere from three to six months of relief from pervasive and annoying symptoms: hoarse voice, noisy breathing and the persistent feeling that there's something caught in his throat.
Jacob's mother, Lori Marshall, has seen the before-and-after difference the procedures can make for her son.
"Afterward, he would wake up and say, 'I can breathe again,' " she says. "It was a huge sense of relief for him and for me. As his mom, it's my job to care for him for life."
Lori knew something wasn't quite right with her son from an early age.
"When he went to kindergarten, he didn't yell like the other kids," she remembers. "When he got a little older, he couldn't chew with his mouth closed."
On April 1, 1997, when Jacob was six years old, he received his official diagnosis. And the Marshalls' lives were changed forever.
"We were shocked," Lori says. "With a condition like this, you don't have any idea what it is when you first hear about it."
The Marshalls quickly learned how challenging Jacob's condition could be. Neighbors, teachers and classmates, for instance, weren't always understanding or polite. For Lori, one of the more irritating reactions she would get from some people who noticed Jacob's condition was, "Well, he looks normal."
Dr. Dailey says it's a common - and hurtful - reaction.
"Unfortunately, people make judgments - usually pejorative judgments - about kids with hoarse voices."
School was initially challenging for Jacob.
"He would sit in the front of the class and hope to go unnoticed," says Lori. "If a teacher said ‘What?' when she had trouble understanding him, he'd be quiet."
As he got older, Jacob developed coping mechanisms that helped him function socially when his voice became hoarse. In school, his younger sister Michaela would often respond to teachers for him, a practice his friends would later continue.
The Marshalls also developed a second family among the speech language pathologists and ENT surgeons at UW. Shannon Theis, the clinical speech pathologist who worked most closely with Jacob, developed a particularly special bond with him.
"Jacob's such an amazing kid," says Theis. "For all he's been through, his spirits have never wavered."
Jacob spent his childhood years in the care of Dr. Diane Heatley, a pediatric ENT surgeon at American Family Children's Hospital. As she explains, Jacob's condition is actually caused by the human papillomavirus (HPV) - and that's what makes it so difficult to treat.
"What you need is for your body to recognize the virus as being foreign, and for an immunological response to occur. With HPV, that doesn't always happen. We can prevent people from getting HPV with vaccines like Gardasil, but there's not much we can do once somebody has it other than try to hold it in check."
Jacob grew up to become, for understandable reasons, a teenager of few words. "Only certain friends knew I had this condition," says Jacob. "It does control your life, but if you have a negative attitude toward it, you'll end up sitting in the corner and never talk."
Instead, Jacob has met his challenges head-on.
Despite his vocal obstacles, he became a three-sport athlete at Iowa-Grant High School in nearby Livingston, (baseball, basketball and football) in part because he was able to develop strong nonverbal communication systems with his coaches and teammates. Mike, his father, was his first coach and helped Jacob develop this coping mechanism.
Earlier this year, Jacob transitioned from Dr. Heatley to UW Health's adult ENT service, where Dr. Dailey picked up his care. Dailey performed his first laser procedure on Jacob in May, using a new angiolitic laser that can be deployed in the office setting, without general anesthesia.
Each time Jacob underwent a procedure, there was a risk he'd suffer permanent damage to his vocal cords. But as Dr. Dailey notes, the experts at UW have done their job well.
"Dr. Heatley has done a spectacular job of preserving Jacob's natural vocal cord tissues. There's been no voice damage at all."
A Bright Future
While Jacob's dreams of playing college football have been momentarily delayed - he missed the cut during freshman-year tryouts - other opportunities have presented themselves. He interviewed recently to become an assistant coach for his high school basketball team - another professional dream.
"We're just really happy he has the confidence to be able to pursue these things," says Lori. "He's come so very far."
He could go farther still. According to Dr. Dailey, it's possible that Jacob's papillomatosis will naturally resolve as he gets older. Most cases of childhood-onset papillomatosis cases do.
"It's something I'm definitely hoping for," says Jacob. "We'll just have to wait and see."
Date Published: 07/21/2010