On Valentines Day 2022, Tony woke up with extreme pain in his right hip. The active eighth grader was used to typical aches and pains from sports, but this felt more intense. And the pain kept getting worse.  

His family took him to an orthopedic doctor near his home in central New Jersey who examined him and ordered tests that left them without answers. “The doctor told us, ‘This is out of my wheelhouse,’ and referred us to CHOP,” says Lauren, Antonio’s mom. 

Seeking answers at CHOP 

Lauren called the Orthopedic Center at Children’s Hospital of Philadelphia (CHOP) to schedule an appointment. After describing Tony’s symptoms over the phone – including that he couldn’t put any weight on his right leg without extreme pain – a nurse encouraged them to come to CHOP’s Emergency Department immediately. 

There, experts from orthopedics, rheumatology and infectious diseases examined Tony before admitting him for further testing. Though his symptoms were vague and often variable, it was clear his pain was real.  

The ED team consulted with Wudbhav “Woody” N. Sankar, MD, a world-leading expert in pediatric hip disorders. Dr. Sankar reviewed Tony’s imaging scans and made the diagnosis: Tony had idiopathic chondrolysis of the hip (ICH), a rare and unexplained bone disease that destroys the articular cartilage within the hip joint. There is no known cause of idiopathic chondrolysis; it is often discovered during adolescence.  

Typical treatment of ICH involves both rheumatologists and orthopedic doctors and focuses on controlling the pain and improving function in the joint. Rheumatologists are doctors who specialize in inflammatory or autoimmune diseases – such as arthritis – that affect joints.  

In some cases, ICH can be treated with anti-inflammatory medications, physical therapy and supportive aids. Some patients improve, while others become increasingly stiff and painful, often ending in complete destruction of the hip joint and a need for early hip replacement.   

Tony was discharged home with recommendations to continue using crutches to get around, to limit his movement based on his pain levels and to follow up with Emily Jane Liebling, MD, an attending rheumatologist at CHOP. 

A fresh perspective  

For the next year, Dr. Liebling guided Tony’s outpatient care. His symptoms – stiffness, limited range of motion and difficulty standing, among others – suggested he may be dealing with a rheumatological condition in addition to idiopathic chondrolysis. But test after test came back negative. 

Navigating middle school with crutches was challenging, so his mom agreed to allow him to attend school virtually. Tony rarely left the house except for doctors’ appointments. “I tried to stay in touch with friends through online video games like Minecraft and Fortnight, but it was tough because I couldn’t really hang out,” Tony says. 

In May 2023, the family met with Dr. Sankar, an orthopedic physician and expert in pediatric hip disorders.  

“Dr. Sankar and Dr. Liebling were a dream team,” Lauren says. “They worked together to figure out some new non-surgical approaches to try. They were amazing and kind, answering all our questions.” 

Tony was prescribed a biologic medication – in the hopes of preventing further joint damage and improving his function – as well as a cortisone injection and physical therapy. None were successful in relieving Tony’s pain. 

Time for surgery 

In September 2023, an MRI revealed Tony’s hip joint was deteriorating. He had a bone deformity in his hip socket and the growth plate at the top of his femur was damaged. It was time to discuss surgery.  

 Dr. Sankar presented the family with two treatment options: 

• In the first, Tony’s hip would be immobilized to rest the joint, and an external device would be attached to his body to act as the hip joint for 12 weeks. This option was minimally invasive but came with an increased risk of infection. 
• In the second, Tony would undergo a complex surgery to dislocate his right hip, reshape the ball-and-socket hip joint, graft new cartilage into the joint, then reassemble the bones and connect them with three screws. This procedure would require crutches for 8-12 weeks. 

Dr. Sankar encouraged Tony and his family to take time to consider the options. Tony didn’t need long to make his decision: the more complex surgery with greater likelihood of a permanent solution.  

The 3-hour surgery at CHOP’s Main Hospital in Philadelphia in December 2023 went well, and Tony was able to go home in time for Christmas.