Legg-Calve-Perthes Disease: Andrew’s Story

“When I say he’s super athletic, I mean he’s a bouncing-off-the-walls kind of kid who runs around in the yard with a football playing catch with himself,” says his mother, Sherry Luke. So when Andrew had surgery that required him to stay off his feet for nine months, his family thought he would be devastated.

Instead, as any athlete would, Andrew kept his eyes on the goal, using his love of sports as motivation to completely heal. 

Hip pain and a diagnosis

Two years ago, when he was 11, Andrew came home complaining of pain in his left hip. His parents figured their son had strained a muscle playing baseball. The pain subsided on its own, but a week and a half later Andrew came home from a friend’s house crying and barely able to walk. The pain in his hip had become “excruciating,” Sherry remembers.

Andrew’s father, Tom, carried his son to the car and drove him to the ER. An X-ray showed that the ball-shaped head of the thigh bone had deteriorated. Doctors raised the possibility that Andrew might have a rare genetic condition known as Legg-Calve-Perthes disease. This was familiar to Tom, whose own brother was diagnosed with the disease as a 7-year-old and had to use crutches for three years. With Perthes disease, the femoral head loses its blood supply. This causes the bone to die and eventually collapse. Andrew was transported to a children’s hospital in nearby Delaware, where an MRI confirmed the diagnosis. From there, Andrew was referred to pediatric orthopaedic surgeon Wudbhav N. Sankar, MD, of the Hip Disorders Program at Children’s Hospital of Philadelphia (CHOP).

Dr. Sankar described multiple treatment options including prolonged crutch use combined with physical therapy and femoral osteotomy (a bone cut in the femur to reposition the hip). However, given Andrew’s older age for the condition, he also offered a specialized procedure called core decompression and microsurgical free vascularized fibula grafting. The vascularized fibula grafting was the most invasive option but offered the best outcome based on Andrew’s age, the extent of the condition and its expected course. While Sherry and Tom weighed their choices, Andrew did his own research. After reading up on the procedures, he told his parents that he wanted the vascularized fibular grafting surgery.

“It seemed like the only option for him at that point,” Sherry remembers. “Here’s a kid whose whole life is baseball and wrestling and he won’t even be able to walk” if the other treatments were to fail.

The surgery

Vascularized fibular grafting is a complex procedure in which dead bone is removed and replaced with a section of the patient’s own fibula bone (smaller bone in the leg). It is only offered at certain pediatric hospitals in the country but has the potential to directly increase blood flow to the hip. Because the surgery involves connecting blood vessels at the hip to the blood vessels from the piece of fibula bone, Dr. Sankar teamed up for the vascular portion of the surgery with L. Scott Levin, MD, FACS, chair of the Department of Orthopedic Surgery at the Hospital of the University of Pennsylvania.

The surgery was scheduled for a day in July 2015, two months after Andrew was diagnosed. He had been using crutches since then and was eager to move onto the next step of his recovery.

Ten hours passed between the time Andrew was prepped for surgery and when his parents saw him again. They were updated on the progress of the surgery throughout. Afterward, Dr. Levin held a doppler device to their son’s hip. His parents heard the blood circulating once again through the bone.

“We were extremely excited,” Sherry says.

In February — seven months post-surgery — Andrew was allowed to put weight on his left leg. That spring, Dr. Sankar gave him the OK to rejoin his baseball team, but in a limited capacity. Instead of playing his usual position of shortstop, which required running and diving, Andrew played first base. A pinch runner would step in when Andrew got a hit at bat. Finally, 15 months after surgery and after a year of physical therapy, Andrew got the all-clear to participate fully in sports. It was just in time for wrestling season.

At first, Sherry noticed that her son was less mobile than before his diagnosis. But as the weeks went by, he hit his groove. Andrew won match after match, ultimately wrestling his way to second place in the middle school regional championships. He also earned the Inter County Wrestling League’s Little Engine That Could award for the best eighth-grade wrestler.

“Considering we didn’t even know if he would be able to wrestle again, then to come back full throttle … when he got in the championship I had tears in my eyes,” Sherry says.

Even more gratifying than seeing her son return to the sports he’s always loved, Sherry says, is the way Andrew handled being taken out of the game for 15 months. She says he discovered a strength he didn’t know he possessed. Now he accepts setbacks on the field and on the mat with grace.

“It’s helped his sportsmanship. He takes losses more in stride,” Sherry says. “He probably figures that compared to what he’s been through, this is nothing.”