The Only Option

Despite all these problems, experts say there are still cases, like Caitlin’s, when joint replacement remains the only option.

“There are still kids that don’t respond, can’t afford the treatments or don’t do well with the treatments and their arthritis progresses and they still need surgery,” says Mark Figgie, MD, chief of the surgical arthritis service at the Hospital for Special Surgery in New York.

From the age of 3, Caitlin tried medication after medication, but still endured hospital stays and arthritis flares that caused her to miss school. She went into an unexplained remission for a few months in 2008, then relapsed. Her pain was increasingly debilitating and between March 2008 and March 2009, measurements and X-rays taken by doctors showed her left leg shortened about an inch as her hip essentially crumbled and turned on itself.  

“Her hip bone was dying from the damage and all the prednisone over the years,” Colleen says.

The pain got so bad, Caitlin, a middle schooler, began taking Vicodin daily, just to get through her classes. She had terrible anxiety, couldn’t sleep and was having problems in school. She was seeing a pain management team, having acupuncture, getting herbal remedies and massage – all to no avail.

“It was a nightmare,” Colleen says, “I would have given anything to take the pain away from her.”

Caitlin’s parents and doctors tried to put surgery off as long as possible, but it soon became clear they had run out of options.

“I did not feel like there was any choice. As much as I wanted to wait and I wanted her to be older and you worry about how long the joint will last, there was no choice to let her continue living in chronic pain like that,” Colleen says.

Caitlin had her left hip replaced on August 11, 2009.

Night and Day Difference

“It’s night and day. I have a different daughter now,” Colleen says. “So much of the darkness we had last year, it was all pain,” she says.  “Every part of our lives got better.”

Caitlin’s doctors hope her new joints will last 10, 15, maybe even 20 years, but nobody knows for sure. For now though, they say her newly replaced hip is working very well.

“In general it sounds scary that this girl has one titanium hip,” Dr. Reiff says. “But on the other hand, this titanium hip allows her to be fully functional.”

Dr. Figgie estimates that nationwide, less than 1,000 juvenile arthritis patients a year require joint replacements. As a result, finding doctors who do the procedure and equipment suited for young children can be a challenge.

Dr. Figgie is in the process of putting together a multi-center study involving institutions that have experience with pediatric total joint replacements to gather data on patients and their surgeries.