Northern California Teen Shares Cerebral Palsy and Scoliosis Care Journey

For as long as Tessa can remember, she has been a Shriners Children’s Northern California patient. Tessa was born premature at 27 weeks.

Doctors kept a close eye on her development. When she was a toddler, her pediatrician observed that she was not meeting her developmental milestones and was slow to walk. Tessa's pediatrician referred her to Shriner's Children's, concerned that some of the signs she was showing indicated cerebral palsy (CP).

Cerebral palsy is a general term applied to many conditions that can result from a disturbance to the developing brain. CP affects muscle tone, movement and coordination. For Tessa, this made it difficult to control some of the movements of her body. Her feet pointed inward, making it difficult to walk. Common activities like speaking, standing or sitting can be challenging for children with CP, and can have associated health conditions related to cognition, speech, vision, hearing, breathing issues or difficulty eating and swallowing.

Seeking Support

Shriners Children’s began working with Tessa right away. To assist with walking, she started out with shoe inserts, then a leg brace, and finally had leg surgery in fifth grade. After her surgery, Tessa had to practice walking with the help of physical therapy (PT). She loved PT for the challenges, both good and bad.

“Physical therapists work with me and always talked me through the process, going at my own pace, and getting me to do things that might be painful,” she said. “I don’t think I could have any better treatment than what they’ve given me.”

Motion Analysis

An additional aspect of Tessa’s treatment plan involved a gait motion analysis study to analyze her walking.

During a motion analysis study, engineers collect data related to a child’s movement, their muscle activity, and the forces their body uses to move. The use of infrared cameras mounted around a large room allows movements to be tracked and displayed virtually as patients walk down a runway, and walk or stand on a special force platform. The information is gathered and translated to a 3-D animation, which allows the team to analyze the patient’s movement.

A Second Diagnosis: Idiopathic Scoliosis

During a routine follow-up gait study, her medical team noticed something. After recovering from her first surgery, Tessa’s spine started to curve. She had developed adolescent idiopathic scoliosis, an abnormal curvature of the spine that appears in late childhood or adolescence. Instead of growing straight, the spine develops a side-to-side curvature, usually in an elongated "S" or "C" shape. The bones of the spine are also slightly twisted or rotated. Thankfully, Shriners Children’s Northern California has a highly reputable spine care program with a pediatric orthopedics department nationally recognized by U.S. News & World Report, in partnership with UC Davis Children’s Hospital. Tessa was able to seek additional treatment from a care team her family knew and trusted.

Tessa’s spinal curve was aggressive, so doctors planned her surgical treatment right away.

At the end of sixth grade, Tessa had her second surgery – this time for the major curve in her spine.

“It’s crazy how they were able to straighten it so much,” Tessa said. “It blows my mind every time I think about it. My quality of life is so much better.”

Following her spine surgery, Tessa received foot surgery to correct her intoeing, which occurs when feet point inward while walking. Her more-affected foot was corrected first, and the other foot will receive treatment later next year.

“Jon Davids, M.D., went above and beyond to accommodate Tessa’s school schedule,” said Tessa’s mom, Diane. “She was afraid she would get behind on school work because of surgery, so he made sure to schedule it after school was out for the summer. This eased Tessa’s worries so much going into surgery.”

After each of Tessa’s surgeries, she woke up to a gift bag full of goodies, including fun pillowcases and toys. This small gesture brightened her day and made the healing process easier.

“When I had my first surgery, I really didn’t expect it,” said Tessa. “It was a really nice surprise.”

Inspired to Give Back

Tessa’s positive experiences at Shriners Children’s sparked an idea for her senior year project: a fundraiser to supply toys for Shriners Children’s patients recovering from surgery, Tessa’s way of paying it back.

For her project, she created a video describing her experience with Shriners Children’s Northern California, and the impact a toy can make. She shared the video with her community, friends and family. Tessa raised over $6,000 to support Shriners Children’s. A portion of the funds supported the Bear Den, which gives patients the opportunity to choose a stuffed animal and accessories after an appointment or procedure.

Tessa’s work with Shriners Children’s has expanded: She is now a Shriners Children’s Northern California Patient Ambassador, sharing her story and care journey with Shriners Children's, in communities across the state.

“I want everyone to know about Shriners Children’s,” said Tessa. “My hope is that sharing my story and experience will also inspire others to pursue medical care here, or help raise funds to support care for others who need it.”