As of 2020, an estimated 17,800 new cases of spinal cord injury (SCI) occur annually in the U.S., excluding those who die at the site of incidence, according to the National Spinal Cord Injury Statistical Center. Approximately 20% of these injuries occur in children and adolescents. Shriners Hospitals for Children provides exceptional rehabilitation programs and conducts groundbreaking research to help these children adapt, discover all they can achieve and accomplish, and become as independent as possible.
Maddie’s artwork, titled “American Flag”
A program to promote independence
The primary goal of the SCI program at Shriners Hospitals for Children is to assure that kids with SCI participate fully in their communities, attain independence and live satisfying lives while avoiding medical complications. To achieve this task, the program provides a wide range of rehabilitative services and therapies that build strength and stamina, increase social interaction and build confidence and self-esteem.
Our innovative approach also incorporates groundbreaking procedures, such as surgical implants that allow severely injured children to breathe without a ventilator, and advanced tendon and nerve transfer surgery, which can restore function and sensation.
After tendon and nerve release surgery, Maddie has been able to return to her true passion – creating art.
Benefiting from intricate surgery
When she was in high school four years ago, Maddie was in a car crash that resulted in a spinal cord injury. Her family learned about the SCI program at Shriners Hospitals for Children — Philadelphia through a news story about a patient who had undergone tendon and nerve transfer surgeries there. The procedures were performed by Scott Kozin, M.D., chief of staff of the hospital. Dr. Kozin is a recognized leader in upper extremity surgery and is known for his work with nerve and tendon transfers for patients with SCI.
Maddie and her family met with Dr. Kozin and established a care plan, which included surgery. Maddie hoped the surgery would increase her ability to pinch and grasp with her hands and fingers, so she could return to her passion – drawing.
After a few surgeries and hours of intense occupational therapy provided by therapists at Shriners Hospitals for Children, focused on re-learning movements and re-engaging muscles, Maddie re-gained meaningful mobility in her hands.
Following treatment, she was better able to use her iPad and software to create designs that have been incorporated into both clothing and tattoos by friends and family.
“These outcomes are important and noteworthy, as they demonstrate that nerve and tendon surgery is an effective intervention for SCI patients that improves both physical ability and quality of life,” said Dr. Kozin.
Skating through life
Alyssa has won first place in women’s skating competitions.
In Sacramento, California, 14-year-old Alyssa was tearing up the skate park. She launched herself into a 12-foot vertical drop, shot straight down the concrete bowl lined with chipped pool tiles, and raced full speed to the other side, where she spun back around with a look of fierce determination. Alyssa uses a wheelchair.
“I’ve seen her do a lot of tricks, and I have to admit, that was the first time I’ve been a little nervous for her,” said Alyssa’s mother, Anna.
Alyssa took first place in the women’s division (her coach regularly registers her for adult-level competitions) at the WCMX – the BMX for wheelchair riders – and Adaptive Skate World Competition in April 2020.
Alyssa was diagnosed with leukemia at age 2. A year later, she developed a spinal infection that left her partially paralyzed.
“The doctors just kept telling me she would be confined to a chair for the rest of her life, and I would have to learn to deal with it,” said Anna. “And that was the end of the discussion. I refused to let that be my daughter’s life.”
Anna brought Alyssa to Shriners Hospitals for Children — Northern California when she was 4, and from the very first appointment, doctors provided Alyssa and her family with therapy options, treatments and additional surgeries to improve Alyssa’s overall well-being.
Over the years, Alyssa has been cared for by a multidisciplinary team at the hospital, including orthopaedic surgeons, spine surgeons, physical therapists, urologists, bowel management specialists and more. She has been fitted for various assistive mobility devices as she has grown.
“Shriners Hospitals has been there for us through the years in every possible way, whether it’s help getting a new wheelchair faster, or help talking to our insurance company about Alyssa’s needs, or even just getting a doctor’s note for school,” said Anna. “Shriners Hospitals is always there.”
Research efforts driving the future of SCI treatments
Shriners Hospitals for Children conducts innovative research to learn more about and improve the lives of those with SCI. Here are just a couple of examples:
Quality of life study: At Shriners Hospitals for Children — Chicago, the research team is creating the PedsQL™ SCI module, the first health-related quality-of-life questionnaire specifically for children and young adults with SCI, from ages 2 to 25. The project is sponsored by the Craig H. Neilsen Foundation.
“Because their daily lives are so different, children with SCI should not be compared on the same health-related quality-of-life measurement tool as children without physical disabilities,” said Kathy Zebracki, Ph.D., chief of psychology at the hospital. “The new questionnaire covers health issues of individuals with SCI over time, including mobility, bladder/bowel functioning, participation and SCI-specific worries. The availability of this information will help Shriners Hospitals for Children improve this patient population’s quality of life and overall well-being.”
Sleep study: Sleep problems that occur in the general population are more common in those with spinal cord injuries. Alicia January, Ph.D., research psychologist at Shriners Hospitals for Children — Chicago, is conducting research on sleep, activity and health behaviors in young adults with SCI in comparison to their peers without SCI. The goal is to develop interventions to improve their sleep and ultimate well-being.
“Having SCI can make it more difficult to fall asleep and stay asleep. There are other secondary conditions like spasticity, or the requirement of nighttime catheterization. There are hormone changes that can occur after spinal cord injury that make it more difficult to fall asleep and stay asleep,” said Dr. January.
“Because we know that sleep is essential for good physical, emotional and psychological health, we wanted to investigate sleep patterns in individuals with spinal cord injury, compared to their peers without spinal cord injury, to determine if patients with SCI had more problems with sleep,” said Dr. January. “Once that is determined, we want to have people with SCI paired up with a health coach to determine if they can identify a change in their sleep regimen to improve their physical health and well-being. That change might be sleep, but it could also be changing physical activity, or being actively involved in their community.”
Combining excellent care with innovative research allows Shriners Hospitals for Children to help our patients with SCI achieve amazing things. SCI care and management is available at our locations in Chicago, Illinois; Philadelphia, Pennsylvania; and Sacramento, California.
