SPINA BIFIDA

What is Spina Bifida?

Spina bifida refers to a condition that affects the development of the backbone, spinal cord, nerves. Also it can affect the fluid-filled sac that surrounds the spinal cord. Unfortunately, this advanced neurological condition may cause part of the spinal cord to develop outside of the body. Also, this disease can affect any portion of the spinal cord.

There are three main types of spina bifida:

• Occulta Spina Bifida is the mildest form of this condition.  The condition typically creates minimal, if any, visual changes on the exterior of the body. Instead, this form affects the development of the lower part of the back.
• Meningocele Spina Bifida is a moderate form of the condition, and has a fluid-filled sac on the exterior of the back.  However the fluid-filled sac does not contain part of the spinal cord or nerve tissue.
• Myelomeningocele Spina Bifida, the most severe form, causes the spinal cord and nerves to develop outside the body. This can lead to severe pain and difficulty moving the lower limbs and controlling bowel and bladder function. The vast majority of infants who suffer from this form also experience hydrocephalus. This condition causes pressure to build up inside the skull, leading to than larger-than-average head size.

Diagnosing Spina Bifida

In the moderate and severe forms, the spina bifida diagnosis is clear due to the protrusions from the back. However, a mild condition may go undetected following birth. In some situations, infants have a hairy spot, mole, or other visual markers that indicate this condition. If the mother decides to undergo amniocentesis, others may receive a diagnosis before birth. This can reveal high levels of alpha-fetoprotein (AFP) that are often indicative of spina bifida. In some cases, you may also be able to see the changes to the spinal cord during an ultrasound. If none of these indicators of spina bifida occulta are present, your child’s case may go undiagnosed for a time until the difficulty with motor skills and other symptoms indicate a need for testing. Then, ultrasound, CT scans, and MRIs may be used to make an accurate diagnosis.

The advantage of being with Medical City Hospital is the focus on both adults and pediatrics. If, while pregnant, your OBGYN detects high levels of alpha-fetoprotein (AFP), your physician can immediately refer you to Medical City Children’s Orthopedic and Spine Specialists and set up a consultation with Doctors Kishan, Hostin, or Wiesman to immediately discuss treatment options.

Treating Spina Bifida 

Like muscular dystrophy, spina bifida cannot be cured. However, with proper treatment and symptom management, your child can lead a long, healthy life. Moreover, treatment for this condition is largely dependent upon which of the three types your child is suffering from. There are both surgical and nonsurgical treatments that may be recommended depending on the severity of this disorder.

Spina bifida is a congenital neural tube defect that occurs when the neural tube, which forms the baby’s spinal cord, fails to close properly during early embryonic development. The severity of this condition can vary widely, and treatment approaches aim to address the specific needs of each individual affected. A multidisciplinary team of healthcare professionals typically collaborates to provide comprehensive care. This article explores various aspects of the treatment of spina bifida, covering medical interventions, surgical procedures, and supportive therapies.

Medical Management: Medical management plays a crucial role in addressing the associated complications and promoting the overall well-being of individuals with spina bifida. Key components of medical treatment include:

Everyday Challenges Associated with Spina Bifida

Living with spina bifida can mean navigating a variety of challenges in daily life, the extent of which depends on the severity and areas affected. Common difficulties may include:

• Handwriting and Fine Motor Skills: Many children experience reduced hand control, which can impact handwriting and manipulating small objects.
• Playing and Social Participation: Challenges with dexterity or mobility may make playing with toys or participating in games more difficult.
• Self-Care Activities: Activities such as washing, dressing, and general hygiene may require adaptive tools or assistance due to limited reach, grip, or coordination.
• Environmental Accessibility: Navigating spaces like bathrooms, getting in and out of the car, or moving around the house may require adaptive equipment or home modifications.
• Access to Education: Physical challenges or frequent medical appointments can sometimes impact school attendance or participation, and may necessitate accommodations or individualized education plans.

These challenges underscore the importance of a holistic approach to treatment, addressing not just the medical aspects of spina bifida but also the practical, everyday needs of patients and their families.

Medical Management

Medical management plays a crucial role in addressing the associated complications and promoting the overall well-being of individuals with spina bifida. Key components of medical treatment include:

Prevention of Infections

• Individuals with spina bifida are more prone to urinary tract infections (UTIs) and skin infections. Prophylactic antibiotics, along with regular monitoring and prompt treatment of infections, are essential to prevent complications.

Management of Neurological Symptoms

• Medications, such as antispasmodic drugs and nerve pain medications, may be prescribed to manage symptoms related to nerve damage. This includes muscle spasms and neuropathic pain.

Orthopedic Care

• Orthopedic issues are common in spina bifida, and interventions may include braces, orthopedic shoes, and physical therapy. These items address musculoskeletal challenges and improve mobility.

Navigating the Home with Spina Bifida

Mobility within the home can present unique challenges for individuals with spina bifida, especially as children grow and their needs evolve—or following illness or injury. Movement from room to room, transferring in and out of bed, or managing stairs can be difficult for those with lower limb weakness, poor balance, or reduced sensation. Additionally, obstacles like rugs, narrow hallways, and inaccessible bathrooms can further impact safety and confidence.

Adapting the living space is often essential:

• Mobility Aids: Wheelchairs, walkers, and grab bars can help navigate common areas safely.
• Accessible Design: Installing ramps, widening doorways, and adding non-slip flooring can make a significant difference.
• Home Modifications: Shower chairs, raised toilet seats, and lower countertops empower children and teens to maintain independence in daily self-care.
• Organized Layout: Keeping essential items within easy reach and reducing clutter minimizes the risk of trips and falls.

Physical and occupational therapists play a vital role in recommending the best equipment and strategies tailored to each child’s abilities. The goal is to foster self-reliance, promote confidence, and minimize the frustration that can come from everyday barriers.

Collaboration with reputable equipment providers, such as Invacare andSunrise Medical, can help families select high-quality, customized mobility aids and adaptive devices suited to their home environment.

Standing and Self-Support

Children with spina bifida often face difficulties with standing and self-support, whether due to muscle weakness, joint deformities, or neurological impairment. Following an illness, injury, or simply as your child grows, maintaining or regaining the ability to stand can be a crucial part of daily function and independence. Physical therapists may work closely with your child to develop targeted exercises and stretches that encourage strength, flexibility, and balance. In some cases, adaptive equipment such as standing frames or walkers may be recommended to assist with weight-bearing and posture.

By addressing these orthopedic and mobility challenges early, the healthcare team can help your child maximize their independence and participate more fully in daily activities, school, and social settings.

Surgical Interventions

Spina bifida treatment includes surgery to correct spinal cord defects, manage associated complications, and improve overall function. Common surgical interventions include:

Closure of the Spinal Defect

• In the early days of life, infants with spina bifida often undergo surgery to close the opening in the spine. This procedure, known as closure of the neural tube defect, helps protect the exposed spinal cord and nerves.

Hydrocephalus Management

• Hydrocephalus, a common complication in spina bifida, may necessitate the placement of a ventriculoperitoneal (VP) shunt to redirect excess cerebrospinal fluid from the brain to the abdominal cavity, preventing pressure buildup.

Orthopedic Surgeries

• Orthopedic surgeries may be required to correct musculoskeletal deformities, such as scoliosis or joint contractures, to improve mobility and prevent further complications.

Supporting Children with Complex Needs

Children with spina bifida often require practical and ongoing support for their complex needs. This can include specialized equipment, custom seating, splinting, and sometimes modifications at home to ensure safety and independence. Our team works closely with families to assess and provide the right resources—whether it’s helping you choose the best wheelchair, arranging for adaptive seating at school, or collaborating with physical and occupational therapists to recommend splints or braces that optimize comfort and function.

We understand that navigating housing adaptations or obtaining essential equipment can be daunting. Our staff offers guidance throughout the process, from paperwork to connecting you with local organizations and resources. We believe in empowering families and children with the tools and support needed for daily life—whether that means finding the right walker for a toddler or making sure a teenager has access to technology and services that foster independence.

Physical Therapy

• Physical therapy focuses on improving strength, coordination, and mobility. It helps individuals with spina bifida maximize their functional abilities and maintain optimal musculoskeletal health.

Occupational Therapy

Occupational therapy addresses activities of daily living, fine motor skills, and adaptive strategies to promote independence and enhance life. For many individuals with spina bifida, this can mean targeted support for a range of everyday challenges, such as:

• Improving handwriting and fine motor coordination
• Overcoming difficulties with playing or manipulating toys due to reduced hand control
• Developing strategies for self-care activities like washing and dressing
• Adapting environments to improve access to baths, toilets, the home, or vehicles
• Facilitating participation and accessibility within educational settings

By focusing on these areas, occupational therapy empowers individuals to navigate daily tasks more easily, supporting both independence and overall quality of life.

Support for Handwriting Difficulties in Children with Spina Bifida

Handwriting challenges are common among children with spina bifida, often stemming from difficulties with fine motor skills, hand strength, or coordination. Fortunately, several interventions can help children build their handwriting skills while boosting confidence and fostering independence.

• Occupational Therapy: An occupational therapist can assess specific challenges and tailor interventions to improve grip, posture, and hand control. Therapy sessions often involve exercises to enhance dexterity, activities that strengthen hand muscles, and practice using adaptive writing tools.
• Assistive Technology and Tools: Specialized pencils, pen grips, slant boards, and even digital devices such as tablets with stylus pens can make writing manageable. The goal is to make writing less frustrating for children.
• Classroom Strategies: Collaborating with teachers to provide extra time for written assignments, using printed worksheets, or allowing for oral responses can reduce stress and accommodate each child’s needs.
• At-home Practice: Simple activities like drawing, playing with modeling clay, or engaging in crafts can reinforce fine motor skills outside of therapy sessions. Consistent, low-pressure practice is key to gradual improvement.
• Support Groups and Resources: Connecting with organizations like the Spina Bifida Association or local parent support networks can provide tips, encouragement, and opportunities to share strategies with other families facing similar challenges.

With a combination of professional support, the right tools, and encouragement from family and educators, children with spina bifida can overcome handwriting hurdles and gain both skill and confidence along the way.

Psychosocial Support

• Coping with the challenges of spina bifida can be emotionally taxing. Psychosocial support, including counseling and support groups, can provide emotional support for individuals and their families.

By considering both the clinical and everyday aspects of spina bifida, treatment can be tailored to help individuals not only manage symptoms but also overcome practical obstacles and build independence for a fulfilling life.

Common Challenges Faced by Individuals with Spina Bifida

Spina bifida brings with it a variety of day-to-day challenges, many of which can directly impact both the individual and their family. Some of the most frequent issues relate to mobility and the ability to navigate different environments, especially accessing spaces in and out of the home.

Mobility and Accessibility at Home

Entering and leaving the home can become a significant hurdle for children and adults with decreased mobility. Steps, narrow doorways, or uneven thresholds often require modifications such as ramps, wider doors, or lifts to ensure safe and independent access. Handrails and grab bars may also be necessary in entryways and hallways.

Transportation Difficulties

Getting to school, medical appointments, or community activities can be complicated without accessible vehicles or public transport options. Modified vehicles with wheelchair lifts and transfer boards, as well as ride-share services equipped for mobility devices, can help address this challenge.

Navigating Public Spaces

Many public places still lack adequate accommodations for wheelchair users or those with limited mobility. Uneven sidewalks, lack of curb cuts, and inaccessible restrooms can impede participation in community life. Advocacy for better accessibility—supported by legislation such as the Americans with Disabilities Act (ADA)—continues to play an important role.

Independence and Daily Living

Beyond physical barriers, individuals with spina bifida may experience difficulties with self-care tasks such as dressing, bathing, or transferring in and out of bed or chairs. Occupational therapists often recommend adaptive equipment, such as shower benches or specialized utensils, to foster independence and improve quality of life.

Awareness of these common problems can help families and caregivers prioritize interventions and seek out resources, creating safer and more accessible environments for their loved ones with spina bifida.

Fostering Confidence and Social Participation

Children with spina bifida may sometimes face unique challenges in social situations, particularly in classroom participation and building friendships. Addressing these concerns involves a thoughtful, individualized approach to nurturing confidence and interpersonal skills.

• Therapeutic Support: Structured activities led by occupational therapists can help children practice communication, teamwork, and problem-solving, providing a safe environment to build self-assurance. This may include social skills groups or role-playing exercises designed to simulate common social scenarios.
• Peer Engagement Opportunities: Encouraging participation in inclusive extracurricular activities, such as sports adapted through organizations like the Special Olympics or community art programs, supports both physical abilities and social interaction, promoting a sense of belonging.
• Positive Reinforcement: Caregivers and educators can reinforce self-esteem through consistent encouragement and recognition of achievements, no matter how small. Setting attainable goals and celebrating progress helps children recognize their strengths and potential.
• Mentorship and Modeling: Connecting children with spina bifida to mentors or peer buddies—either in person or via online communities like the Spina Bifida Association—can offer relatable role models and foster supportive friendships.

By integrating these strategies, families and professionals can work together to empower children with spina bifida, helping them build the confidence necessary to fully engage both in and outside the classroom.

Conclusion:

The treatment of spina bifida is a multifaceted and lifelong process that involves medical management, surgical interventions, and supportive therapies. With advances in medical science and a comprehensive, collaborative approach to care, individuals with spina bifida can lead fulfilling lives. The goal is to maximize a child’s potential and independence. Early intervention and ongoing monitoring by a dedicated healthcare team — like the Medical City Children’s Orthopedics and Spine Specialties with offices in Arlington, Dallas, Flower Mound, Frisco, and McKinney, TX — are crucial for optimizing outcomes and addressing the evolving needs of those affected by spina bifida. We are accepting new patients and invite parents of a spina bifida child to call us for an appointment.

____________________

Footnote:

Centers for Disease Control and Prevention: Spina Bifida