Spina Bifida Care and Education

Our Approach to Spina Bifida

Spina bifida can affect many areas of your child’s health, development and daily life. You may be managing medical appointments, equipment needs and school concerns all at once. But you do not have to navigate this alone.

At Scottish Rite, we work across specialties so every part of your child’s health is addressed together. Our approach focuses on long-term planning, education and increasing independence.

Your child’s care plan is designed to support self-reliance at home, at school and in the community. Our Spina Bifida team partners with you to address the full impact of spina bifida across childhood (from birth to adulthood).

Your Child’s Care Team

Your child’s care plan is developed by specialists who focus on specific areas of health and development:

• Developmental Disabilities specialists who guide growth, learning and long-term planning
• Neurosurgeons who monitor shunts (devices that help drain fluid from the brain) and spinal cord conditions
• Urologists who protect kidney health and support bladder and bowel independence
• Orthopedic surgeons who address problems with the muscles and bones, like foot and spine differences 
• Physical therapists who support strength, mobility and endurance
• Occupational therapists who build daily living skills and self-care independence
• Therapeutic recreation specialists who help your child participate in sports and community activities
• Orthotists who design custom braces and mobility equipment
• Dietitians who help manage bowel programs and nutrition
• Social workers who guide you through resources and planning
• Psychologists who support emotional well-being and help your child and family thrive

How Spina Bifida Can Affect Your Child

Spina bifida affects each child differently. Some children have mild effects, while others need more medical support.

Common areas of impact may include: 

• Differences in movement or strength
• Bladder or bowel control challenges
• Changes in sensation or feeling
• Learning or executive functioning differences
• Skin pressure injuries

If your child has been diagnosed or you notice these signs, early evaluation can help prevent complications and support long-term health.

Treatment for Spina Bifida

Your child’s treatment is personalized based on their age, development and specific needs.

Care may include:

• Bracing
• Casting
• Orthopedic surgery
• Neurologic surgery
• Bladder and bowel management programs
• Physical therapy
• Occupational therapy
• Skin monitoring and prevention
• Psychological support

Our goal is to help your child stay healthy, prevent complications and build independence in daily life.

Long-Term and Lifelong Care

At Scottish Rite, we understand that spina bifida requires ongoing monitoring throughout childhood and into adulthood and our team has decades of experience. We focus not only on today’s needs, but on long-term independence and transition to adult care.

We partner with you to adjust care as your child’s needs change:

• In early childhood, care often focuses on establishing routines and monitoring development. 
• During school years, attention expands to mobility, learning and participation. 
• In adolescence, care increasingly supports independence and self-management.

Beginning around age 14, we introduce structured transition planning. We help teens build self-care skills and gradually take a more active role in managing their health and care plan.