Spina Bifida
Spina bifida is a congenital condition in which the spine and spinal cord do not develop normally before birth. Its effects range from few or no symptoms to complex neurological, orthopedic, bladder, bowel, and hydrocephalus-related needs.
Quick Answer
Spina bifida is a birth defect affecting the spine and spinal cord. The impact varies widely by type and level of involvement. Some children have few symptoms, while others need coordinated neurosurgical, orthopedic, urologic, rehabilitation, and developmental care throughout childhood.
Key Takeaways
- Spina bifida is present at birth and affects how the spine and spinal cord develop.
- There are several forms, including spina bifida occulta, meningocele, and myelomeningocele.
- Children with spina bifida may also develop hydrocephalus, Chiari II malformation, or tethered cord syndrome.
- Treatment focuses on preserving neurological function, mobility, bladder and bowel function, and independence.
- Many children with spina bifida lead active, fulfilling lives with specialized medical care.
At a Glance
| Condition | Spina bifida |
|---|---|
| What it is | A congenital condition in which the spine and spinal cord do not develop normally before birth |
| Who it affects | Present at birth and diagnosed during pregnancy, at birth, or during childhood |
| Types | Spina bifida occulta, meningocele, and myelomeningocele |
| Common concerns | Weakness, sensory changes, orthopedic problems, hydrocephalus, bladder/bowel dysfunction, or tethered cord |
| Diagnosis | Prenatal ultrasound or fetal MRI; after birth, examination and MRI or other imaging when needed |
| Treatment | Individualized surgical and multidisciplinary care |
| Long-term outlook | Early diagnosis and coordinated care can help children achieve healthy development and greater independence |
Understanding Spina Bifida
Spina bifida is a congenital condition that occurs when the spine and spinal cord do not develop normally during the first few weeks of pregnancy. The effects vary widely: some children have mild forms that cause few or no symptoms, while others have more complex forms that affect movement, sensation, bladder and bowel function, and brain development.
Types of Spina Bifida
Spina Bifida Occulta
The mildest form. A small gap is present in one or more vertebrae, while the spinal cord and nerves usually develop normally. Many people never know they have it unless it is discovered during imaging.
Meningocele
A sac of fluid protrudes through an opening in the spine, but the spinal cord itself usually remains in its normal position. Neurological problems are often less severe than with myelomeningocele.
Myelomeningocele
Part of the spinal cord and surrounding nerves develop outside the spine, resulting in varying degrees of weakness, sensory changes, bladder and bowel dysfunction, orthopedic problems, and increased risk of hydrocephalus and Chiari II malformation.
Conditions Commonly Associated With Spina Bifida
Children may also develop hydrocephalus, Chiari II malformation, tethered cord syndrome, scoliosis, hip and foot deformities, bladder dysfunction, and bowel dysfunction. Regular follow-up helps identify problems early.
Signs & Symptoms
The symptoms of spina bifida depend on the type, the level of the spinal defect, and whether the spinal cord or nerves are affected.
Often Few or No Symptoms
Many children have no symptoms. A small dimple, patch of hair, birthmark, or fatty lump may sometimes be present over the spine.
Usually Milder Neurological Effects
A fluid-filled sac is present on the back, but the spinal cord usually remains within the spinal canal. Neurological symptoms are often mild or absent.
Effects Vary by Spinal Level
Possible effects include leg weakness or paralysis, loss of sensation, difficulty walking, orthopedic deformities, bladder or bowel dysfunction, hydrocephalus, Chiari II malformation, and tethered cord syndrome.
When Should Parents Seek Evaluation?
New or worsening leg weakness, changes in walking or balance, increasing back or leg pain, loss of bladder or bowel control, progressive scoliosis, or symptoms of hydrocephalus such as headaches, vomiting, or excessive sleepiness should be evaluated promptly.
Diagnosis and Evaluation
Spina bifida is often diagnosed before birth during routine prenatal screening. In other cases, the condition is recognized at birth or later in childhood.
Prenatal Diagnosis
Prenatal ultrasound can identify many cases of open spina bifida. Fetal MRI may provide additional detail about the spinal abnormality and associated findings.
Evaluation After Birth
After birth, a pediatric neurosurgeon evaluates neurological function, movement and sensation, bladder and bowel function, orthopedic alignment, and any skin abnormalities over the spine.
Imaging and Associated Conditions
MRI is commonly used to evaluate the spinal cord and surrounding structures. Brain imaging may be performed when hydrocephalus or Chiari II malformation is a concern. Depending on the child’s needs, evaluation may also involve urology, orthopedics, rehabilitation, and developmental specialists.
Treatment
Treatment depends on the type and severity of spina bifida and the individual needs of the child. Care often evolves as a child grows.
Surgical Repair
Children born with myelomeningocele typically undergo surgical repair shortly after birth to protect exposed spinal cord tissue and reduce the risk of infection.
Hydrocephalus, Tethering & Orthopedic Care
Treatment may include VP shunt placement or ETV for hydrocephalus, tethered cord release when neurological symptoms develop, and orthopedic procedures for scoliosis or foot deformities.
Rehabilitation and Support
Bladder and bowel management, physical rehabilitation, mobility support, and coordinated specialty care help children maximize independence and participation in daily life.
Long-Term Follow-Up
Spina bifida is a lifelong condition. As children grow, new concerns such as tethered cord syndrome, scoliosis, hydrocephalus-related problems, or changes in bladder function can develop and require evaluation.
When to Seek Evaluation
- New or worsening leg weakness
- Changes in walking or balance
- Increasing back or leg pain
- New or worsening bladder or bowel dysfunction
- Progressive scoliosis or other changes in spinal alignment
- New headaches, repeated vomiting, or unusual sleepiness that could indicate hydrocephalus
The Diagnosis-to-Treatment Pathway
1. Diagnosis
Spina bifida may be identified during pregnancy, at birth, or later through physical examination and imaging.
2. Comprehensive Evaluation
Neurological function, spinal anatomy, hydrocephalus, bladder and bowel function, mobility, and orthopedic needs are assessed.
3. Imaging
MRI and other imaging help define the spinal abnormality and identify associated conditions such as tethered cord or hydrocephalus.
4. Individualized Treatment Planning
Care is tailored to the type of spina bifida, symptoms, neurological function, age, and associated conditions.
5. Treatment
Care may include surgical repair, treatment for hydrocephalus or tethered cord, orthopedic care, urologic management, rehabilitation, and other supportive therapies.
6. Long-Term Follow-Up
Neurological function, mobility, development, bladder and bowel function, spinal alignment, and associated conditions are monitored as the child grows.
Frequently Asked Questions
Spina bifida is a congenital condition in which the spine and spinal cord do not develop normally during early pregnancy.
Spina bifida is a neural tube defect. Its development is influenced by a combination of genetic, nutritional, and environmental factors; in many cases there is no single identifiable cause.
The main forms are spina bifida occulta, meningocele, and myelomeningocele. They vary substantially in how much the spinal cord and nerves are affected.
Yes. Many cases of open spina bifida can be detected with prenatal ultrasound, and fetal MRI may provide additional detail.
No. Treatment depends on the type and associated problems. Children with myelomeningocele typically require repair, while other children may need treatment for hydrocephalus, tethered cord, orthopedic problems, or bladder and bowel dysfunction.
Associated conditions can include hydrocephalus, Chiari II malformation, tethered cord syndrome, scoliosis, orthopedic deformities, and bladder or bowel dysfunction.
Mobility varies widely depending on the level and severity of spinal cord involvement. Some children walk independently, while others use braces, mobility aids, or wheelchairs.
Yes. With coordinated medical care, rehabilitation, educational support, and appropriate treatment, many children with spina bifida participate actively in school, family life, sports, and their communities.
Spina Bifida Specialist at Atlantic Brain and Spine
Kate T. Carroll, MD, provides specialized pediatric neurosurgical care for children with spina bifida and related neurological conditions.
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