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Spina Bifida

With appropriate pediatric specialty care, children with spina bifida should be able to lead an active, healthy, and productive life. At WVU Medicine Children’s, you and your child are not alone. We do everything possible to help your child have the best quality of life.

Spina bifida is a condition that typically develops in the first month of pregnancy. It results in a gap between the spinal bones (vertebrae). In the most serious form, myelomeningocele, the spinal cord can bulge through the opening. It can be covered by skin or completely exposed and will typically affect the lower part of the spine.

Your loved one will receive compassionate care from our team of specialists. Pediatric neurosurgeons, urologists, orthopedic surgeons, neurologists, complex care pediatricians, psychologists, nurse practitioners and social service professionals all work together to ensure the best possible outcome.

Types of spina bifida include:

  • Open spina bifida, or myelomeningocele, is the most serious type. A pocket filled with fluid and part of the spinal cord and nerves bulges through an opening in your baby’s back. Surgery is typically required within the first few days of life.
  • Meningocele causes a pocket filled with fluid to bulge creating a lump or sac on the back.
  • Closed spina bifida, or spina bifida occulta, includes lipomyelomeningocele and other tethered cord syndromes. Skin covers the area and surgery is typically performed later in infancy.

Some types of spina bifida are diagnosed during pregnancy. Others are diagnosed after your baby is born or even in late childhood or adulthood.

Conditions We Treat

We help your child be as strong and healthy as possible, no matter what. We offer advanced care for all conditions related to spina bifida. These include:

  • Arnold-Chiari malformation (brain tissue extends into spinal canal)
  • Caudal regression (abnormal development of lower spine)
  • Childhood syringomyelia (cyst on the spinal cord)
  • Encephalocele (sac-like protrusions of the brain)
  • Hydrocephalus (water on the brain)
  • Lipomyelomeningocele (abnormal growth of fat on the spinal cord)
  • Lipomeningocele (defects in the spinal cord)
  • Myelocystocele (skin-covered mass)
  • Neurogenic bladder/bowel (lack of bladder/bowel control from brain, spinal cord, or nerve problem
  • Sacral dysgenesis (abnormality of the lower spine)
  • Tethered spinal cord syndromes

Your child will receive expert care for disorders that may result from spina bifida, including:

  • Coordination problems or weakness
  • Headaches
  • Incontinence and urinary tract infections
  • Learning disabilities
  • Leg deformity or mobility concerns
  • Seizures

Treatments and Services

Because kids born with spina bifida have unique needs, we treat each person as an individual at WVU Medicine Children’s. This means that treatment is designed specifically for the needs, wishes, and goals of each patient and family.

Advanced technologies are used to diagnose and treat spina bifida.

Diagnosis

  • Maternal/fetal ultrasound
  • Maternal/fetal MRI (magnetic resonance imaging)
  • Maternal serum alpha-fetoprotein test to confirm elevated levels in the mother’s blood

Treatments

  • Fetal or infant surgery to repair spina bifida
  • Spinal cord surgery for release of tethered cord
  • Neurosurgery to relieve hydrocephalus and Chiari malformation
  • Urologic diagnostic and therapeutic procedures to ensure optimal urinary function
  • Orthopedic diagnostic and therapeutic procedures to optimize functional ambulation, deformity correction, and positioning/transfers

Long-term, longitudinal follow-up care is emphasized throughout childhood and adolescence.

Resources

At WVU Medicine Children’s, we are always here to support you and your child. Here are some additional resources to help you learn more about spina bifida, what to expect for your child, and where you can find additional support near you.

Spina Bifida Association
The association is devoted to responding to the needs of people whose lives have been touched by spina bifida.

Centers for Disease Control and Prevention (CDC)
The CDC provides resources and support to meet the needs of people with spina bifida and their families.

The Spina Bifida Resource Network
The Spina Bifida Resource Network provides services and programs to children, adults, and families living with spina bifida and other disabilities.

Locations

Address:
1 Medical Center Drive
Morgantown, WV 26506

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Contact Info:
Main Hospital: 304-598-4000
Appointments: 1-800-988-2273
Child Life Program: 304-598-4365
Injury Prevention Program: 304-598-6011

Website: https://wvumedicine.org/childrens/

Address:
1 Medical Center Drive
Morgantown, WV 26506-1200

Map it

Contact Info:
Appointments: 855-988-2273

1 Medical Center Drive Morgantown, WV 26506
304-598-4000


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