Pediatric Spina Bifida Center

Pediatric Spina Bifida Center

Understanding Spina Bifida: A Guide for Patients and Families

 

What is Spina Bifida?

Spina bifida is a birth defect that occurs when the spine and spinal cord don't form properly. It's a type of neural tube defect that can cause a range of physical and neurological issues. The severity of spina bifida can vary greatly from person to person.

Types of Spina Bifida

  • Spina Bifida Occulta:¬†The mildest form, where there is a small gap in the spine, but no opening or sac on the back. It often doesn't cause any symptoms or disabilities. It is important to see a pediatric neurosurgeon, however, as many patients can have tethered cords or other spinal anomalies that may cause problems later in life.

A bump on the lower back concerning for a lipomyelomeningocele, a form of spina bifida occulta.

A tuft of hair that is a sign of possible spina bifida occulta.

A sacral dimple that is a sign of possible spina bifida occulta.

  • Meningocele:¬†A rare form where a fluid-filled sac protrudes through the spine, but the spinal cord is not in this sac. There may be minor disabilities.

A myelomeningocele that needs to be treated soon after birth.

  • Myelomeningocele:¬†The most severe form, where the spinal canal is open along several vertebrae in the back, allowing the spinal cord and membranes to protrude, forming a sac. This can result in significant disabilities. Surgery to repair the defect must often be performed in the first few days of life.

A myelomeningocele that needs to be treated soon after birth.

 

Symptoms of Spina Bifida

Symptoms can range from none to severe and may include:

  • Weakness or paralysis in the legs
  • Bowel and bladder problems
  • Hydrocephalus (excess fluid in the brain)
  • Orthopedic issues (such as scoliosis)

 

Diagnosing Spina Bifida

Spina bifida can often be diagnosed before birth through:

  • Maternal blood tests
  • Ultrasound
  • Amniocentesis

After birth, imaging tests like Ultrasound, MRI, or CT scans can provide more information.

 

Treatment for Spina Bifida

Treatment depends on the type and severity of the condition and may include:

  • Prevention: Folate deficiency is a common and important cause of spina bifida. It is important to take the proper supplementation in the first trimester to reduce the risk of spina bifida.
  • Prenatal counseling: If your unborn baby is diagnosed with spina bifida, it is important to consult with a pediatric neurosurgeon to learn more about the disease specific to your child.
  • Surgery:¬†For myelomeningocele, surgery is usually performed within 24 to 48 hours after birth to close the opening in the spine. For other types of spina bifida, surgery is usually performed when patients are a little older.
  • Shunt Placement:¬†To manage hydrocephalus, a shunt may be placed to drain excess fluid from the brain.
  • Physical Therapy:¬†To improve mobility and muscle strength.
  • Orthopedic Devices:¬†Such as braces or wheelchairs to aid movement.
  • Bowel and Bladder Management:¬†Techniques to manage continence.
  • Ongoing Medical Care:¬†Regular check-ups with a team of specialists.

 

Living with Spina Bifida

Many people with spina bifida lead full and active lives. It's important to have a supportive care team, which may include neurosurgeons, urologists, orthopedic surgeons, physical therapists, and other specialists.

Support and Resources

  • Spina Bifida Association: https://www.spinabifidaassociation.org/
  • Educational resources: Coming Soon!

Contact Us For more information or to schedule an appointment with our Spina Bifida Clinic, please contact us at 973-326-9000.

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NOTICE: This website is for informational purposes only and is not intended as medical advice or as a substitute for a patient/physician relationship.

NJPNI is committed to creating a culturally diverse, inclusive and collaborative community for patients and their families, employees and associates where each person is celebrated and has a sense of equal belonging. See our DEI Statement Page for more information.

NJPNI does not exclude, deny benefits to, or otherwise discriminate against any person on the grounds of race, color, or national origin, or on the basis of disability or age in admission to, participation in, or receipt of the services and benefits of any of its programs and activities or in employment therein. This statement is in accordance with the provisions of Title VI of the Civil Rights Act of 1964, Section 504 of the Rehabilitation Act of 1973, the Age Discrimination Act of 1975, and Regulations of the U.S. Department of Health and Human Services issued pursuant to the Acts, Title 45 Code of Federal Regulations part 80, 84, and 91.

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