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Shriners Children’s welcomed healthcare professionals and clinicians from all over the United States and Canada during the Spina Bifida Association’s annual Spina Bifida Clinical Care Meeting held in Sacramento from May 31 to June 1, 2024. The Spina Bifida Clinical Care Meeting (SBCCM) provides a platform for professionals and advocates to engage with the latest developments, challenges and successes in spina bifida care. This event, welcoming physicians, nurses, therapists, advocates and individuals living with spina bifida, offers unparalleled opportunities for collaboration, learning and networking.
More than 15 care professionals from Shriners Children’s Northern California shared their knowledge and research with spina bifida leaders from around the country, ranging from panel presentations to workshops. Topics included updates on the CuRe trial for spina bifida research, helping parents understand aspects of neuropsychological evaluations, social work in a clinical setting, improving independence in patients, and an overview of Shriners Children’s Northern California’s spina bifida clinic.
Spina bifida is a condition that affects the spine and is usually apparent at birth. It is a type of neural tube defect and can happen anywhere along the spine if the neural tube does not close all the way. When the neural tube doesn’t close completely, the backbone that protects the spinal cord doesn’t form and close as it should. This often results in damage to the spinal cord and nerves. Spina bifida can be diagnosed during pregnancy or after a baby is born. Not all people born with this condition have the same needs, so treatment is different for each child. Some patients have complications that are more serious than others.
Maya Evans, M.D., stands with Spina Bifida Association's staff.
"This is such an amazing display of collaboration,” said Shriners Children’s Northern California Hospital Administrator Kenny Pawlek. “As a proud event host, partner and sponsor, we are reminded of the importance of evidence-based protocols in addressing the unique needs of individuals living with spina bifida. Both organizations share a deep commitment to advancing care and enhancing quality of life for all children. Together with the Spina Bifida Association's unparalleled advocacy and support network, we are creating a powerful alliance that ensures families receive the resources, education and medical care they need in the Sacramento region and beyond. This partnership underscores our mutual dedication to empowering children with spina bifida to lead healthy, fulfilling lives."
The Lifespan Bowel Management Protocol Workshop on May 30 addressed a critical aspect of spina bifida care: the importance of evidence-based protocols in enhancing continence and reducing constipation. Shriners Children’s Northern California is home to the only comprehensive pediatric colorectal and gastrointestinal program in the Shriners Children’s healthcare system, and it is the only program of its kind in the state of California. The Pediatric Colorectal Center is one of only 18 hospitals in the nation that offers this highly-specialized pediatric colorectal and gastrointestinal care. This program was developed in 2016 to support the many children with spina bifida, spinal cord abnormalities or cerebral palsy, who also have colorectal and gastrointestinal conditions. The Pediatric Colorectal Center at Shriners Children’s Northern California was designated as a Special Care Center for Colorectal care by the Department of Healthcare Services of the state of California.
Shriners Children’s Northern California received a framed photo of downtown Sacramento from the Spina Bifida Association as thanks for hosting this year’s annual meeting. Medical director of the spina bifida program's inpatient rehabilitation program, Maya Evans, M.D., passed the hosting baton to next year’s meeting host, Betsy Hopson, MSHA, at the University of Alabama at Birmingham.
The 2024 Spina Bifida Clinical Care Meeting was full of rich discussions, professional development opportunities and interdisciplinary collaboration.
Shriners Children’s Northern California health professionals who shared research or presented at the 2024 SBCCM include:
