Pectus Excavatum: Brandon's Story
Patient Story Highlights
- Fifteen-year-old Brandon, known as Sota Boy on YouTube, shares his life experiences through his videos, including his struggle with pectus excavatum, a chest deformity.
- Pectus excavatum, also called "funnel chest," affects approximately 1 in 1,000 people and impacts both appearance and stamina.
- Dr. Paul Danielson, chief of pediatric surgery at Johns Hopkins All Children's Hospital, recommended a corrective procedure involving surgical steel bars to reshape Brandon's chest.
- The procedure has significantly improved Brandon's life, boosting his confidence and allowing him to participate in activities with more ease.
Fifteen-year-old Brandon looks directly into the camera and greets his viewers with his signature salutation.
“What is up, beautiful people of the internet? My name is Sota Boy…”
Taking a dramatic pause to flip his honey-brown locks out of his eyes, Sota Boy launches into the day’s subject matter for his latest YouTube video. The videos have become a creative outlet and a source of fun for Brandon—as he’s explored everything from firecrackers to fidget spinners, bicycle wipe-outs, skateboarding, even a review of Publix cookies.
But on this day, Sota Boy is sharing all about a more serious life experience. Born with a chest deformity called pectus excavatum, Brandon knew from an early age that his body was a little different from other boys.
“You could definitely see that my chest was indented,” Brandon says. “I was self-conscious about it.”
The lay term for pectus excavatum is “funnel chest.” It occurs when the cartilage of the chest grows improperly, forcing the sternum downward, causing the chest to cave inward. About one in a thousand people have some degree of pectus excavatum, about three times as many boys as girls. A third of the time, it runs in families.
As Brandon approached adolescence, his case had become fairly severe. He tried to make the best of it, often handling it with humor around his friends.
“I’d make jokes about it. I’d say things like, ‘Hey, I can probably eat cereal out of here!” Brandon quips.
But it was hard not to be self-conscious. The awkward questions in gym class. The moments at the pool or the beach where other kids would peel their shirts off while Brandon kept his on.
The teenager’s pectus excavatum was also impacting his stamina. The condition can create compression on the heart and lungs, and it can even displace the heart over to one side. Brandon noticed he would get winded while riding his bike or playing tennis.
When Brandon was 14, Paul Danielson, M.D., chief of pediatric surgery at Johns Hopkins All Children’s Hospital, advised that the time was right to consider a corrective procedure.
“I thought it would be really painful and traumatic, but he’s recuperated fast. It’s incredible they can do this. I’m amazed by this surgery.”Mimi
It can be a hard choice for families to make, because pectus excavatum doesn’t generally impact overall health in a serious enough way to require an operation.
“What really motivates these kids is the psycho-social stigma that goes along with this,” Danielson says. “It impacts them in the life choices they make.”
Danielson says there’s a fairly short window when conditions are ideal to perform the procedure. The best time is often around ages 14 to 16—after the patient’s biggest growth spurts, but before they’ve become skeletally mature, when the chest becomes harder to re-shape, and recovery can be more painful.
The operation definitely involves some hardware—namely, a sizable surgical steel bar. A device in the operating room allows the surgical team to gently bend the bar and shape it to suit each patient. After that, it’s inserted through small incisions under the patient’s armpit.
“We tunnel the bar under the skin and behind the breastbone,” Danielson explains. “We place the bar in such a way that when we rotate it, it actually pushes the sternum out.”
The bar stays in for about three years, at which time the condition is corrected, and the bar can be removed.
For more severe cases, as in Brandon’s, two bars are inserted.
“It’s like raising the roof of your house,” Danielson says. “If you really need to raise that roof, you sometimes need more than one rafter, or more than one beam to hold it up.”
Experienced surgeons have been successfully correcting pectus excavatum at Johns Hopkins All Children’s Hospital for decades. But they continue to make great strides in treatment and care. The surgical team has worked hand in hand with the perioperative team to shorten hospital stays, to make pain care more manageable, and to improve outcomes. Danielson authored research on the subject, published in Pediatric Surgery International in August of 2017.
But if Brandon’s surgeon was interested in knowing how he was doing, he only needed to check out his patient’s YouTube videos to find out. Brandon, in keeping with his inclination to share his life through his YouTube channel, candidly documented his medical experience in a play-by-play for his followers.
Brandon’s mom, Mimi, had been more worried about his recovery than the actual procedure.
“I thought it would be really painful and traumatic, but he’s recuperated fast, Mimi says. “It’s incredible they can do this. I’m amazed by this surgery.”
Brandon recalls waking up after his day in the operating room, with a welcome surprise.
“I felt around and said, ‘Whoa, I have a chest!’” Brandon says. “It looked like a normal chest should look. It was a big change.”
Life keeps getting better for this outgoing teenager. Suffice to say, he’s working on plans for a trip to the beach with friends soon.
Brandon doesn’t even mind checking out his chest in the mirror once in a while.
“I’m like, wow … looking good!”
Paul Danielson, M.D.
Johns Hopkins All Children's Pediatric Surgery
The Division of Pediatric Surgery at Johns Hopkins All Children's Hospital, based in St. Petersburg, Florida, provides a wide range of services including advanced miniature access and minimally invasive surgery, neonatal surgery, congenital diaphragmatic hernia surgery, chest wall deformity surgery, ambulatory wound services and oncology surgery.