Spina Bifida

Diagnosing Spina Bifida

Spina bifida is sometimes diagnosed before birth and sometimes after a baby is born. The evaluation depends on when the condition is discovered and the type of spina bifida suspected.

Prenatal Diagnosis

Spina bifida can often be identified during a detailed prenatal ultrasound. A maternal blood test called alpha-fetoprotein (AFP) screening can also identify an increased risk for an open neural tube defect.

If an ultrasound or screening test suggests spina bifida, additional imaging and testing may be recommended. This can include a detailed fetal ultrasound and, in some circumstances, amniocentesis.

A prenatal diagnosis allows the family and medical team to discuss the expected effects of spina bifida and plan delivery and treatment after birth.

Evaluation After Birth

Open spina bifida is usually apparent at birth because of the opening or sac on the baby's back. Doctors will perform a detailed physical and neurological examination to determine how the spinal cord and nerves are affected.

Testing may include:

• MRI: Provides detailed images of the spinal cord, brain and surrounding structures. It can help identify tethered spinal cord, spinal cord abnormalities and other conditions associated with spina bifida.
• Ultrasound: May be used to evaluate the spinal cord and brain in young infants and can also help assess the kidneys and urinary tract.
• X-rays: Can evaluate the spine, hips and other bones for orthopedic problems.
• Urodynamic testing: Evaluates how the bladder stores and empties urine and helps guide treatment.
• Kidney and bladder imaging: May be used to monitor the urinary tract and identify problems that could affect kidney function.
• Neurological and developmental assessments: Help the care team understand your child's movement, strength, sensation and development.

Children with spina bifida typically need ongoing monitoring rather than a single evaluation because new orthopedic, neurological or urologic problems can develop as they grow.

Treating Spina Bifida

There is no treatment that reverses the underlying spinal cord abnormality. Instead, treatment focuses on protecting exposed spinal cord tissue, preserving kidney and bladder function, improving mobility and independence, and addressing complications as they develop.

Because spina bifida can affect many parts of a child's health, treatment often involves several pediatric specialists.

Surgery for Myelomeningocele

Babies with myelomeningocele generally need surgery to close the opening in the back and protect exposed spinal cord tissue.

Urologic Treatment

Protecting kidney function is a major goal of spina bifida care because nerve damage can interfere with how the bladder stores and empties urine.

Treatment may include:

• Clean intermittent catheterization
• Medications to improve bladder storage or control
• Treatment for urinary tract infections
• Bowel management programs
• Regular kidney and bladder monitoring
• Surgery when needed for significant bladder or urinary tract problems

A pediatric urology team can help families establish a bladder and bowel program that changes as their child grows.

Orthopedic Treatment

Spina bifida can affect the development and alignment of the hips, legs and feet. Orthopedic care may include:

• Braces and orthotics
• Physical therapy
• Positioning and stretching programs
• Treatment for hip, foot or spinal abnormalities
• Surgery when necessary

Regular orthopedic monitoring can identify problems early and help maintain mobility and comfort.

Physical & Occupational Therapy

Physical therapy can help children develop strength, balance, mobility and endurance. Occupational therapy focuses on skills needed for everyday activities, including dressing, eating, school activities and personal care.

Therapists can also recommend equipment that promotes independence, such as:

• Braces
• Walkers
• Wheelchairs
• Adaptive seating
• Standing devices
• Other assistive technology

The goal is to help each child move and participate as independently as possible.

Developmental & Educational Support

Some children with spina bifida have learning, attention or executive-function difficulties. Developmental assessments can identify areas where additional support may help.

Children may benefit from:

• Speech and language therapy
• Neuropsychological evaluation
• Individualized educational services
• Occupational therapy
• Developmental therapies
• Assistive communication or learning technology

Long-Term Care for Children With Spina Bifida

Spina bifida requires ongoing care throughout childhood and often into adulthood. Your child's needs may change as they grow, so regular follow-up is important even when they are doing well.

Long-term care may include monitoring of:

• Spinal cord health
• Bladder and kidney function
• Bowel function
• Mobility and muscle strength
• Spine, hip and leg development
• Skin health
• Growth and nutrition
• Development, learning and school performance
• Independence and quality of life

Children with myelomeningocele also need ongoing monitoring for associated conditions, including hydrocephalus and tethered spinal cord.

The goal of long-term care is not simply to treat complications as they arise. It is to anticipate problems, protect your child's health and help them develop the skills and confidence needed for greater independence.