Overview

Spina Bifida is a congenital condition that occurs when the neural tube does not fully close during early pregnancy, affecting the development of the spine and spinal cord. It is present at birth and can range from very mild to more complex forms that require ongoing medical and supportive care.

Spina Bifida exists on a spectrum, and each individual’s experience is unique. With appropriate supports, many individuals with Spina Bifida lead full, meaningful lives.

Types of Spina Bifida

Spina Bifida is commonly categorized into several types, including:

• Spina Bifida Occulta – a mild form that may cause few or no noticeable symptoms

• Meningocele – where a sac of fluid protrudes through the spine

• Myelomeningocele – the most complex form, involving spinal cord exposure and greater medical needs

The type and location of the spinal opening often influence how the condition presents.

How Spina Bifida May Affect Individuals

Spina Bifida can impact multiple areas, such as:

• Mobility and muscle strength

• Balance and coordination

• Bladder and bowel function

• Sensation or nerve signaling

• Learning differences or attention challenges

Not all individuals experience the same challenges, and abilities can vary widely.

Common Characteristics

Individuals with Spina Bifida may:

• Use mobility supports such as braces, walkers, or wheelchairs

• Require assistance with medical routines or daily care

• Benefit from structured routines and adaptive tools

• Develop strong problem-solving skills and independence

• Show resilience, determination, and adaptability

Strengths and independence often grow alongside the right supports.

Support and Interventions

Support for Spina Bifida is typically multidisciplinary and may include:

• Surgical and medical care

• Physical and occupational therapy

• Assistive mobility or adaptive equipment

• Educational accommodations and learning supports

• Ongoing care coordination across providers

Early intervention and consistent follow-up play a key role in long-term outcomes.

For Families & Caregivers

Families supporting someone with Spina Bifida often balance medical care, accessibility needs, advocacy, and daily life adjustments. This journey can evolve over time, bringing new challenges and milestones at each stage.

Connection, planning, and shared resources can help reduce overwhelm and build confidence.

How Infinity Pathways Supports Spina Bifida

Infinity Pathways creates flexible tools that help families communicate needs, track supports, and share important information across healthcare, education, and community environments. Our resources are designed to adapt as individuals grow and their needs change.

A Note on Language & Identity

Some individuals identify strongly with the Spina Bifida diagnosis, while others prefer person-first or ability-focused language. We honor all preferences and believe respectful language begins with listening.