Lily’s case was uncommon, even to the seasoned experts in the Orthopedic Center at Children’s Hospital of Philadelphia (CHOP). 

Avascular necrosis – a disease which kills bones by disrupting blood flow – had caused severe pain in Lily’s right hip, leaving Lily’s family reeling and filled with questions. 

“That's the craziest part,” Katrina, Lily’s mom said. “It's so rare for somebody her age with no history of steroid use or chemotherapy or anything to get this.” 

While not usually thought of as a pediatric orthopedic procedure, total hip replacement at CHOP would prove to be the answer the family needed, not only preserving Lily’s ability to walk, but building her confidence and bringing back her smile.

Worsening leg pain and finding a diagnosis at CHOP

A competitive dancer attending practice 5 days a week, Lily’s condition, in a way, crept up on the family. 

At 11 years old, Lily started to complain of soreness in her right leg, what Katrina assumed was just a product of her daughter working so hard. 

“She got through the first competition fine,” Katrina recalled. “The second competition was pretty seamless except at the end, she fell. And that's not her.” 

Lily’s leaps got smaller and smaller. 

Before long, she had trouble just walking without a limp. 

The family tried ice, sprays, even physical therapy. At a hospital closer to their home, an X-ray of Lily’s hip came back normal. 

But when Lily woke up one night “screaming and crying,” the family knew something was wrong. 

An MRI later, they found themselves at CHOP, speaking with Kathleen J. Maguire, MD. 

Dr. Maguire would ultimately confirm a diagnosis of avascular necrosis in the head of Lily’s right femur. 

Perthes disease prognosis

Also known as Perthes disease or Legg-Calvé-Perthes disease, femoral head avascular necrosis is a condition in which blood flow to the ball – or head – of the femur stops, causing the bone to deteriorate and eventually collapse. 

Following Lily’s diagnosis, hip expert Wudbhav N. Sankar, MD, took the lead on treatment. 

And while Katrina and Lily’s dad, Steve, were “devastated” when the diagnosis was confirmed, Dr. Sankar’s manner helped put the whole family at ease. 

“Dr. Sankar sat down and made sure to address her directly, and not us. He wanted to make sure Lily had an understanding of what was happening,” Steve said. 

Dr. Sankar explained to Lily exactly how he envisioned her treatment journey progressing to and through recovery. 

The first step: Permanent use of crutches to avoid placing any weight on Lily’s right leg, something that would last for several months. 

Core decompression procedure 

Diagnosed in March, Lily underwent core decompression surgery with Dr. Sankar in May. 

In this surgery, a large drill is used to remove a bone column from the femoral head. The intent is to spur healing and bring new blood supply to the area of avascular necrosis. 

Pushing through the initial postoperative pain, physical therapy three times a week became something to look forward to, Katrina and Lily using all those hours in the car to talk about Lily’s life. 

And Lily and her trainer, Tiffany Bonner, PT, DPT, connected to a “bestie” level, Tiffany’s background in gymnastics and cheerleading as much a fit as her personality. 

Unfortunately, Lily’s femoral head did not heal as well as everyone had hoped, and it wasn’t long before she was limping again. X-rays showed that her femoral head had collapsed; instead of being a round ball, it was an irregular egg shape. 

And while short-term approaches were available, to now 12-year-old Lily, they felt like delaying the inevitable. 

So, Dr. Sankar tapped his team member, Christopher J. DeFrancesco, MD, one of only a few pediatric orthopedic surgeons in the country who offer hip replacement surgery, to consider another approach. 

Total hip replacement 

Six months after turning 13, the family met with Dr. DeFrancesco to plan Lily’s hip replacement, an uncommon procedure for a pediatric patient. 

Also known as total hip arthroplasty, a total hip replacement involves replacing the damaged section of hip, both ball and socket, with a prosthetic made of metal, plastic and ceramic. 

On the day of the procedure, “we were very quiet,” Katrina said. “I think we were all terrified.” 

Dr. DeFrancesco and his physician assistant Grace Raup, MPAS, PA-C, were “phenomenal” though. Dr. Sankar even came to the operating room to check in. 

The procedure took a couple of hours, Lily accompanied by her stuffie Bun Bun all the while. 

“She had it from her first surgery, and they’d put Bun Bun in this little gown,” Steve recalled. 

Bun Bun had a surgical cap and hospital bracelet too; CHOP’s nurses doing everything possible to make Lily’s recovery that little bit brighter. 

“For us it was great,” Steve said. “But for Lily it made the big difference, which was everything.”

Lily’s been so moved, in fact, by seeing all the nurses do that she thinks she’d like to become a pediatric nurse herself one day.

Looking forward to the future with a new hip 

For Steve, no dance meant missing out on “the joy Lily had doing it, the joy my wife had doing it, the joy I had watching her do it and watching Lily shine doing it.” 

“She lost a lot of friends, a lot of confidence; I think it really, really shook her,” Katrina added. 

But just a few weeks after her hip replacement, there Lily was, out at a Phillies game, smiling and laughing, barely any hint of a limp. As Steve and Katrina walked the concourse behind her, it occurred to them that someone who didn’t know Lily wouldn’t even be able to tell she had recently had hip surgery. 

Several months later and 13-year-old Lily is even closer to being herself. Recently, she staked a claim to the top bunk in the family’s RV before this summer’s road trip – something she always did before her injury. 

And she’s also back to working with Tiffany, who made certain she was again Lily’s lead physical therapist.   

“She was skipping down the halls in King of Prussia [at physical therapy] last night,” Steve said. “I heard Tiffany remind her, ‘No, you’ve got to take it easy.’”

While Dr. DeFrancesco has counseled the family that more surgery will likely be needed in the future, Lily and her family are comfortable knowing they’re in good hands, backed by the best people and the best treatment. 

“‘I'm going to follow her as long as I'm in practice,’” Steve said, recalling how Dr. DeFrancesco described his commitment to Lily.