Straightening Manny’s Steps: How Shriners Children’s Tackles Cerebral Palsy Care

When Manny was born two months early, his family was ready to overcome the challenges that come with a premature birth.

For his first year, he was a happy and thriving baby. But when Manny turned 1, his grandmother noticed something concerning – he wasn’t walking.

“He wasn’t hitting that major milestone,” said his mom, Jaqueline. “His grandmother suggested we take him to the doctor.”

Manny's primary care doctor, who was already monitoring him due to his premature birth, referred him to a neurologist. After a brain scan, Manny was diagnosed with cerebral palsy (CP). CP is a group of disorders that affect a person’s ability to move and maintain balance and posture. CP is the most common motor disability in childhood. His neurologist believed the resources at Shriners Children’s Northern California could help Manny learn to walk when he was a little older.

Cerebral Palsy Diagnosis and Specialized Care

Manny was admitted to Shriners Children’s Northern California when he was 3 years old.

To better assess Manny’s condition, the team at Shriners Children’s Northern California conducted a gait analysis using their 3D motion analysis lab. This high-tech assessment tracks movement using infrared cameras, which capture how Manny’s muscles and body move as he walks, helping the team create a personalized care plan.

Gait (or motion) analysis is conducted in the motion analysis center (MAC) by engineers who use technology to track the movements of patients who are under the care of Shriners Children’s physicians for a wide range of conditions in addition to cerebral palsy, including brachial plexus, scoliosis, spinal cord injury, clubfoot, muscular dystrophy and spina bifida. By putting reflective markers on very specific parts of the body, engineers in the MAC can collect data that illustrates how a patient stands, walks, runs or jumps. This information informs treatments plans – from surgery to physical therapy – that are tailored for each individual patient.

After analyzing the results of Manny’s tests, his medical team, which included specialists in surgery, rehabilitation and therapy, decided that Manny would benefit from a selective dorsal rhizotomy – a procedure designed to reduce the muscle tightness in his lower limbs.

“We felt Manny would be a good candidate for this surgery to reduce spasticity [involuntary muscle contractions and stiffness] without causing weakness,” explained Vedant Kulkarni, M.D., assistant chief of orthopedics and medical director of the motion analysis center at Shriners Children’s Northern California.

Monitoring for Future Care

Manny’s care team also conducted hip surveillance, which is crucial for children with CP. Dr. Kulkarni discovered that Manny's hips were at risk, leading to a minimally invasive tendon-lengthening surgery to preserve his hip function.

About one in three children with CP are at increased risk for hip displacement and dislocation which, if untreated, can cause problems with walking, movement and sitting. Dr. Kulkarni, with a team of colleagues, is at the forefront of addressing this issue. Dr. Kulkarni’s team created an innovative Hip Screen App that Shriners Children’s made available free online to ensure hip surveillance is accessible for more children.

Early detection through a hip surveillance program can preserve a child's function and prevent pain. Hip surveillance is a regular schedule of clinical examinations and X-rays during childhood that is proven to improve function in children with cerebral palsy.

When he was 6, Manny began therapy in the inpatient rehabilitation program at Shriners Children's Northern California. This comprehensive program includes physical therapy and occupational therapy three times a day. During his rehabilitation, he also continued his schoolwork with Shriners Children’s Northern California’s teaching staff, ensuring his academics remained on track while he healed.

“Manny was a joy to work with,” said Kerry Marini, Shriners Children’s Northern California’s transitions coordinator. “He brightened up the room with his energy, and his classmates were thrilled when he returned to school, proudly showing how well he could walk.”

Kerry’s work as a transitions coordinator includes educating the patient’s teachers and peers about the patient’s treatment and recovery process. In doing so, teachers and peers become an essential part of the re-entry process, ensuring the transition from the hospital back into the community is a healthy, supportive, safe and positive process.

Looking Toward a Bright Future

Now 8, Manny continues to make strides, both in his physical abilities and as a Patient Ambassador for Shriners Children’s Northern California. His positive attitude, big smile and courage inspire everyone he meets.

“Manny has been so brave,” Jaqueline said. “He wasn’t scared before surgery and immediately noticed a difference afterward when he wasn’t walking on his toes anymore.”

As Manny grows, the Shriners Children’s team will continue to monitor his skeletal development. If further intervention is needed, they are ready to help improve his function with additional treatments.

“We know Manny is in the best hands,” said Jaqueline. “Everyone at Shriners Children’s is like family. They’ve given us hope and made us feel so supported.”