Kira was born with cerebral palsy, and as a child, she developed hip pain. The cause: severe neuromuscular hip dysplasia. Eventually, sitting, standing and the slightest motion of her hips caused pain. Doctors did their best to make her comfortable using splints, casting, medication and other traditional techniques. In 2011, Kira saw Jon Davids, M.D., the newly named assistant chief of orthopedics at Shriners Hospitals for Children-Northern California in Sacramento.
A pediatric orthopedic surgeon, Davids directs the Cerebral Palsy Center of Excellence at the hospital. He monitored Kira’s growth with x-rays, and in 2014 performed a complex procedure to reconstruct Kira’s hips. Several months later, just days before her 10th birthday, Kira stood without pain and took 20 steps.
Davids says positive outcomes in children like Kira can be achieved with less-invasive surgery if the hip problem is identified earlier. This prompted him to work with his colleagues to create the California Cerebral Palsy Hip Alliance, which brings pediatric providers together to promote and facilitate the early diagnosis of neuromuscular hip dysplasia in children with cerebral palsy.
Cerebral palsy occurs in about three of every 1,000 births, and it affects coordination, balance and the ability to walk. Hip dysplasia is one of the most common causes of pain and disability. “Previously, doctors diagnosed hip dysplasia based on pain or severe contractures, which occur later,” Davids says. But a schedule of regular physical exams and x-rays—called hip surveillance—can lead to earlier diagnosis.
In October 2015, Davids and his colleagues invited providers from throughout Northern California to a seminar focused on hip surveillance in children with cerebral palsy. Faculty included representatives from California Children’s Services (CCS), Stanford University, Lucile Packard Children’s Hospital and the University of California, San Francisco, Benioff Children’s Hospital Oakland and Benioff Children’s Hospital San Francisco. Attendees learned about x-ray techniques that enable early detection, reviewed surgical and non-surgical treatments, and discussed how they could work together.
This was the springboard for the launch of the California Cerebral Palsy Hip Alliance. The group is modeled after programs in Australia and Sweden, where health professionals integrated hip surveillance into care plans. Data show a schedule of regular physical exams and x-rays in children with cerebral palsy leads to earlier diagnosis of hip dysplasia.
The Alliance is a resource to partners, providing information and consultation regarding the surveillance process. Davids says CCS is pivotal in accumulating data that document cases and outcomes because a large percentage of children in California diagnosed with cerebral palsy benefit from CCS programs. “The goal is to take the first level of screening into the community,” Davids says.
“It provides a path for early diagnosis and positive outcomes.” This collaborative approach to care makes more efficient use of hospital, community and family resources because of the opportunity for quicker intervention, which leads to lower costs and fewer complications. “These are tough cases, and care can take a toll on the family. By working together, we can provide the resources needed to support the care of these children,” Davids says.
Children’s Hospital Association featured the above article by Catherine Curran in April 2016.