Legg-Calvé-Perthes Disease: Daniel’s Story

“It was like somebody punched me in the stomach,” Danny’s father, Daniel Sr., says. “I felt like his childhood was being ripped away from him.”

With Perthes disease, the ball-shaped head of the thigh bone loses its blood supply. This causes the bone to die and eventually collapse. Danny’s treatment would include surgery and months on crutches followed by a year and a half with no running or jumping.

Now, five years later, you’d never know Danny had major hip surgery. He is on the field or court 11 months of the year and competes in tournament baseball. Sometimes he plays two or three games in a single day.

“The disease is like a roller coaster and now it seems like we’re getting down toward the end of the ride,” says Daniel Sr.

Leg pain and a diagnosis

Danny was 7 when he developed a limp and complained of pain in his right leg so severe that he couldn’t sleep at night. His pediatrician attributed it to inflammation of the hip, likely caused by a virus. The pain went away, but when it returned, Danny’s doctor ordered an MRI. The test revealed Perthes disease, a rare hip condition that has no known cause.

The family was referred to pediatric orthopaedic surgeon Wudbhav N. Sankar, MD, of the Hip Disorders Program at Children’s Hospital of Philadelphia (CHOP). Dr. Sankar evaluated Danny and found the disease was in the first of four phases. The bone in the femoral head was dying, which caused inflammation and pain in the hip joint. In the second phase of the disease, the bone starts to fragment, and because the bone is weakened, extra pressure can cause it to flatten over time. Over the next two phases, the femoral head (ball) starts to harden and rebuild itself, and then it continues to remodel as the child grows. The goal of treatment is to keep the femoral head round as the disease runs its course.

Dr. Sankar recommended a procedure called a femoral osteotomy in which the femur is cut and repositioned so the ball can be placed deeper into the hip socket. This helps it retain its roundness. This was followed by exercises to maintain his hip range of motion.

Surgery, recovery and slowly back in the game

Danny had the surgery less than two months after his diagnosis. His treatment plan required him to wear an abduction brace following surgery18 hours each day for six weeks, then at nighttime only for another 15 months. The brace helped him regain motion and further positioned the femoral head in the hip socket, allowing it to remold itself into a round shape. His mom, Stephanie, remembers it as a difficult time for Danny. He was anxious and bored. She would invite his friends over, but had to constantly monitor them to make sure her son didn’t put weight on his leg.

Dr. Sankar gave Danny the go-ahead to walk without crutches about six weeks after surgery. His anxiety subsided, but with an order not to run or jump, his parents realized their son needed an outlet for his energy that was OK’d by his medical team. So they signed him up for swimming lessons — a non-weight bearing activity. Danny swam throughout that winter. When baseball season started up that spring, Dan Sr., who coached his son’s team, put Danny on first or third base where he wouldn’t have to chase the ball. When Danny got a hit at bat, another player would run for him. 

Finally, about two years after Danny’s diagnosis, Dr. Sankar cleared him for all activities.

“It was right before Christmas that he got the clearance to run and jump,” Stephanie remembers. “It was the best early Christmas present ever.”  By luck, a player dropped out of the local basketball league, opening up a spot for Danny to jump back onto the court. 

Danny will continue to see Dr. Sankar for annual checkups throughout adolescence, but Stephanie says you would never know her son was once in so much pain that he couldn’t walk.

“You think your kid is never going to have a normal life again,” Stephanie says. “It’s a hard road, but there is light at the end of the tunnel.”