Newswise — LOS ANGELES (Feb. 17, 2025) --Â Like any typical 10-year-old, Brandon Bateman loved being outdoors and staying active. But when he complained of severe back pain and feeling winded after a short bike ride, his mother knew something was wrong.
“Everything seemed fine before then,” Brandi Bateman said of her son. “Brandon was a very active child. You know, he enjoyed roller coasters, bicycling, gymnastics, jumping off roofs into the pool. You name it, he did it. He loved it all.”
Five years ago, amid the COVID-19 pandemic, a pediatrician suggested genetic testing, which showed Brandon had Marfan syndrome. It’s a genetic disorder that affects connective tissue—the fibers responsible for providing structure and support to organs and tissues in the body. People with Marfan syndrome are often tall and lanky with unusually long limbs, and the condition affects various parts of the body, including the heart, lungs, blood vessels, eyes and skeleton.
February is Marfan Syndrome Awareness Month, highlighting the genetic condition that affects approximately 200,000 people in the United States. The symptoms can vary greatly from person to person. Some patients have mild symptoms, while others, like Brandon, face significant health challenges requiring medical intervention.
Surgery to Breathe Better
Marfan syndrome caused Brandon to develop severe scoliosis—a progressive condition that causes the spine to curve sideways and was the culprit behind his debilitating back pain.
“The scoliosis just got worse,” Bateman said. “It seemed like overnight.”
At the time of his diagnosis, Brandon’s spine was curved at 23 degrees. Four years later, in April 2024, the curve in his spine had nearly tripled to 62 degrees. A typical curvature is about 10 degrees. Brandon’s curvature was so extreme that spinal surgery was recommended.
Initially, Brandon and his family, who live in Tehachapi, California—102 miles from Cedars-Sinai—sought medical care closer to home. But after facing lengthy wait times to see specialists, the Batemans were referred to , a pediatric spine surgeon at .
“In Brandon's case, the scoliosis was so rapidly progressive that he actually started to have stretch marks, which is quite unique,” Illingworth said. “When you have big, big curves, which is not uncommon in kids with Marfan, they start to have long-term health consequences.”
Like most children and teens with Marfan syndrome, scoliosis wasn’t the only pressing issue. In addition to his progressive scoliosis, Brandon had a deep indentation in his chest known as pectus excavatum, a common condition associated with the syndrome that causes the breastbone to sink into the chest. The chest indentation required another surgery.Â
“Brandon had a very deep pectus excavatum defect, where his sternum was heading back toward his spine and compressing the area where the heart would be. As a result, the heart was being squished and pushed over,” said , surgeon-in-chief and associate director of Surgery at Cedars-Sinai Guerin Children’s, director of the Division of Pediatric Surgery and vice chair at the Jim and Eleanor Randall Department of Surgery at Cedars-Sinai.
To fix Brandon’s sunken chest wall, Kim, in collaboration with thoracic surgeon , performed a minimally invasive procedure that involved creating two small incisions on either side of the chest. A thin, strong titanium bar was scooped underneath the breastbone and muscle, lifting and supporting the sternum and chest wall.
Kim said he placed two bars to spread out the pressure. The bars will stay in place for three years until the chest wall has set in its corrected position.
“My chest doesn't have that indent that it had. It's just straight. And it's like, I feel normal now,” Brandon said.
Kim also performed cryoablation, or freezing of the chest nerves that transmit pain signals to the brain, for pain control after surgery.
“It means kids need far less narcotics for pain after the surgery,” Kim said. “They are out of the hospital in one to two days as opposed to five to seven days.”
Brandon isn’t completely out of the woods. He will always have Marfan syndrome, which means he will need to remain vigilant for other associated complications, especially heart and eye issues related to the condition.
But Brandon and his mother are thrilled with the remarkable results the surgeries yielded and grateful for the multidisciplinary team of specialists who jumped on board to care for him.
“We want doctors who will carry on his care after he turns 18,” Brandon's mother said. “Cedars-Sinai is the best place for that. We have all the specialists he’ll need under one roof.”
Living Life to the Fullest
With successful surgeries and challenging recovery behind him, Brandon is back to being a teenager.
Today, at 15, he is doing the things he loves most—riding his motorbike, jumping on trampolines and living life to the fullest.
“Being able to do those things again feels amazing,” Brandon said. “I don’t feel like I’m limited by my condition anymore. I feel like I can do whatever I want.”
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