The sparkly blue sneaker on Hayden Cortez’s left foot is a few inches taller than the one on her right.
Padded with orthotic foam, it tells the story of a dislocated left hip that once caused immense pain for the 7-year-old. Now Hayden is enrolled in a preventive program at Shriners Hospitals for Children Northern California that aims to keep her right hip in place and her right shoe on the ground.
Hayden was diagnosed with cerebral palsy shortly after birth. Like many children with the neurological disorder, which affects how the brain communicates with nerves and muscles, Hayden never took her first steps. She began using a mobility-assisting “stander” at 1 year old and was introduced to a chair a few months later.
Sabrina O’Leary didn’t know it, but the ball of her daughter’s left femur was slowly inching away from its hip socket – a side effect of cerebral palsy called hip dysplasia. By the time Hayden was 5, she couldn’t stand, or even sit in her wheelchair, for more than 15 minutes without becoming uncomfortable.
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Hayden does not speak, but she let out anguished cries and clenched her small fists in pain, her mother said.
“You’re told these things can happen, and that you kind of just have to wait and see,” she said. “And that’s really hard – how do I sit back and wait to see if this is going to happen to my child?”
Physicians don’t usually X-ray the hips of children with cerebral palsy until symptoms appear, said Dr. Jon R. Davids, assistant chief of orthopaedics at Shriners hospital on Stockton Boulevard in Sacramento. By then, the painful separation of the thighbone and the hip socket is well underway.
It is difficult to get funding for preventive measures such as X-rays for patients without symptoms, Davids said. Frustrated by watching child after child suffer preventable and often irreversible damage, he and other surgeons founded the California Cerebral Palsy Hip Alliance in October.
“If you screen these children before they’re having obvious clinical problems, you can pick up the disease process earlier and you can intervene earlier,” he said. “The results are better if you’re dealing with them proactively rather than reactively.”
Hip dysplasia affects about one-third of the 10,000 children born in the U.S. with cerebral palsy each year. It happens slowly, as the ball of the hip’s migration percentage – a way to measure the ball’s distance from the hip socket – gradually increases. If dysplasia is caught when that measure is less than 60 percent, children are eligible for soft tissue surgery, which manipulates the tendons and muscles around the hip to push the ball back in. For some children, it’s the only procedure they’ll need.
If the migration percentage is between 60 percent and 90 percent, patients are eligible for bone reconstruction surgery, a more complicated procedure that ideally returns the ball to the socket. If hip dysplasia is caught at 90 percent, neither of those two operations is feasible. Surgeons can only perform a hip salvage procedure to provide pain relief.
Hip surveillance, as he calls the alliance’s newly developed protocol, refers to a series of pelvic X-rays and specialized physical exams that can monitor children with cerebral palsy as young as 2 years old. Catching hip dysplasia early can lead orthopedists to perform more proactive, less complicated surgeries that spare children from major reconstruction procedures later, Davids said.
Davids performed bone reconstruction surgery on Hayden’s dislocated left hip in March, but before that he ordered X-rays on her right hip even though it hadn’t caused her discomfort.
The scans revealed that the ball of the right hip had wandered from the socket, but not so far that it required reconstruction. While repairing Hayden’s left hip, Davids also inserted a growth reduction device into the right side as a preventive measure that O’Leary hopes will keep her first-grader off the operating table for a while.
Hayden is back to school and functioning comfortably in her wheelchair and stander.
“She’s doing fabulously,” O’Leary said. “(The surgery) wasn’t just this short term fix. It was a long-term plan.”
The California Cerebral Palsy Hip Alliance is a partnership between Shriners; the Stanford University School of Medicine; the University of California, San Francisco, School of Medicine; and California Children’s Services, a state program that provides subsidized medical care for children with disabilities. In the coming year, the alliance will roll out early surveillance guidelines to hospitals, clinics and private practices throughout California in the hopes that it will become the norm in the U.S.
Currently, only a handful of hospitals are using early hip surveillance protocols, most of which are based on the current guidelines in Australia. Early surveillance protocols were found to be effective in a literature review from the National Institutes of Health published in 2012.
Children with cerebral palsy enrolled in California Children’s Services are assessed annually, and X-rays and surgeries are used when needed, said Dr. Robert Dimand, chief medical officer of California Children’s Services, in an email.
The success of the Australian surveillance guidelines, now well-documented, have made it easier for orthopedic surgeons to make the case for earlier exams and imaging, which cost additional time and resources.
“There is increased interest in surveillance tools for hip dysplasia,” Dimand said. “The potential is significant for improving the quality of life for children diagnosed.”
Still, implementing preventive measures in a health care system set up for reactive care is difficult, Davids said. His job now is to prove that early surveillance is worth the investment.
“It’s every day, it’s all day,” he said of monitoring the hips of kids with cerebral palsy. “You can’t be working with these children in this population and not be aware of the problem, and not be aware of what’s happening around the world. (Early surveillance) is part of doing it the right way.”