KNOXVILLE, Tenn. — In an exam room at East Tennessee Children’s Hospital, all eyes were on 14-year-old Tinsley Allen as he became the first patient in Tennessee and one of the first in the nation to be fitted with a South American medical device.
But Tinsley’s eyes were on his future: eight months to a year from now, when he should be able to take off his shirt to swim without people staring at him.
Since he was about 2 years old, Tinsley has had pectus carinatum, more commonly known as “pigeon chest.” His rib and breastbone stick out from his chest wall, giving him a pointy protrusion, like a bird’s.
A two-year attempt to correct it with an older metal brace showed little progress toward making his chest look “normal” — and besides that, Tinsley said, it was painful.
“It wasn’t padded … and the metal clips dug into my ribs,” Tinsley said. He wore it 12 hours a day — anytime he wasn’t in school — and was responsible for manually tightening the pressure himself, in hopes that the brace could gradually force his chest to a more typical shape.
“It hurt him so bad that he didn’t want to wear it a lot of the time,” said his mother, Debra Allen. “It was a struggle.”
And at the end of the two years, there was very little difference, she said: “It was very discouraging.”
But surgeon Dr. Glaze Vaughan and physician’s assistant Matt Greiner, of East Tennessee Children’s Hospital’s newly opened chest wall clinic, hope for a much better outcome with the newer device, the FMF Dynamic Compression System developed in Argentina.
Vaughan compared it to “going from a T-Model to a Ferrari.” The newer device is fitted over Tinsley’s protrusion, and he wears it an increasing number of hours a day, beginning with four to six.
A digital mechanism on the brace automatically adjusts the pressure, so all Tinsley has to do is wear it for the recommended time, along with some breathing exercises to make his chest more flexible. Vaughan expects within a year to reach their goal, “complete correction, a totally normal chest wall” — before the end of the teen’s freshman year of high school.
Children’s Hospital launched the monthly clinic for children with chest wall deformities a few weeks ago, after noting the hospital treated nearly 70 children last year for the two most common conditions: pectus carinatum, which Tinsley has, and pectus excavatum, or “funnel chest,” when ribs and the breastbone grow inward.
Pectus excavtum patients once had no option but to have a metal rod surgically implanted to help reshape the chest, but a newer treatment suitable for some uses a vacuum bell device that looks like a suction cup attached to the child’s chest. It creates a vacuum seal that gradually lifts the sternum over time.
Vaughan said chest wall deformities are not that uncommon, affecting about one in 5,000 children, with males four times more likely to have them. Most are congenital, and while some are part of larger diagnosed syndromes, he said, many occur on their own with no other health issues, and their cause isn’t clear. Periods of rapid growth — as during puberty — can change the position of the sternum, making the chest wall condition even more pronounced, he said.
While abnormally shaped chest walls can cause difficulty breathing, chest pain, respiratory infections and heart palpitations, Vaughan said, for many children their appearance is the biggest issue. A primary reason to treat the conditions, he said, is that children can develop “distorted body images” that can cause problems with confidence and self-esteem “right when they’re going through adolescence and trying to figure out who they are,” and can even lead to children being bullied.
“We recognize these chest wall disorders are not just cosmetic,” Vaughan said. They can cause “a complete disruption of what a normal teen’s life should be.”
That’s why patients at the clinic will see a multidisciplinary team of surgeons, nurse practitioners, subspecialists like pulmonologists and orthopedists, and psychologists and social workers who can help children deal with body image and psychological issues.
Social workers and care coordinators on the team can help identify resources to help un- or under-insured families afford the treatments, Vaughan said: “We don’t want any child to go untreated because of an inability to pay.”
Though the FMF brace is new and manufactured in a different country, Vaughan said insurance appears to be paying for it — although it can still be pricey for families with high deductibles or co-pays.
Debra Allen said her family’s employee-sponsored BlueCross Blue Shield policy paid all but about $725 of the roughly $3,500 brace; she put $230 down and financed the rest. It’s a little more than three times the cost of Tinsley’s older brace, but “it’s worth every penny,” she said.
Tinsley said he hasn’t been bullied for his appearance, but he enjoys swimming and basketball and has been self-conscious when he removes his shirt in public. While people aren’t ugly, he said, they still stare: “They’re curious.”
Though he notices it’s there, the new brace isn’t uncomfortable, he said, and shouldn’t impede him from his summer activities: farming soybeans, wheat, corn and hay with his father and grandfather, and visiting railroads, an interest instilled by his late grandmother, who took him to railroad tracks when he was a child. He hopes as an adult that he’ll farm and work for Norfolk Southern. By then, the brace — and the condition it corrected — should be a distant memory.
“This way, I won’t have to worry about it when I’m older,” Tinsley said.
