Same-Day Primary Care Appointments.
Spina bifida is the most common neural tube defect. Between 1,500 and 2,000 babies born in the United States are affected each year. There are an estimated 166,000 people living with spina bifida in the U.S.
What is Spina Bifida?
What is Spina Bifida?
Spina bifida is a birth defect that occurs when the neural tube (a layer of cells that develops into the brain and spinal cord) fails to close completely during an embryo’s first few weeks of development. As the bones of the spine and the nerves of the spinal cord continue to develop, the bones do not close completely around the nerves. Part of the spinal cord may stick out through an opening in the bones, causing permanent nerve damage.
Types of Spina Bifida
There are four types of spina bifida:
Occulta
Spina bifida occulta is the mildest and most common form of the condition. Children born with occulta have one or more malformed vertebrae. This form of spina bifida occurs in 10 to 20 percent of the general population and rarely causes disability or symptoms.
Closed Neural Tube Defects
Closed neural tube defects are a group of defects where the spinal cord shows malformations of fat, bone or meninges. In most cases, children have few or no symptoms. In some cases, the disorder can cause incomplete paralysis with urinary and bowel dysfunction.
Meningocele
Meningocele happens when spinal fluid and meninges poke through an abnormal opening in the vertebrae. The malformation does not contain neural elements and may or may not be covered by a layer of skin. Some children with meningocele have few or no symptoms. Others may experience complete paralysis with bladder and bowel dysfunction.
Myelomeningocele
Myelomeningocele is the most severe form of spina bifida. In babies with myelomeningocele, the spinal cord and surrounding structures develop outside the body and are contained in a fluid-filled sac or lesion that is visible on the outside of the baby’s back. The sac is usually located on the lower back, and babies lose function below the area where the defect is located. If the sac is located higher up on a baby’s back, more areas will lose function
Effects of Myelomeningocele
The number and severity of problems in children with myelomeningocele can vary depending on where the sac is located on the spine and how much of the spinal cord is affected. Possible health effects of myelomeningocele include:
- Bowel and bladder problems, including loss of bowel or bladder control and increased risk for urinary tract infections
- Loss of feeling and decreased function or paralysis in the area below the sac (some children may require a wheelchair)
- Heart problems
- Orthopedic issues, particularly clubfoot malformations
- Hydrocephalus (increased fluid and pressure in the head)
- Chiari malformation (a problem where part of the brain bulges outwards, putting pressure on the spinal cord)
- Intellectual and cognitive disability
- Other neurological problems
How is Spina Bifida Diagnosed?
How is Spina Bifida Diagnosed?
Doctors at Riley at IU Health can diagnose spina bifida before birth through:
Since doctors know in advance that you and your baby will require specialized care during and after delivery, you will begin working with a multidisciplinary care team upon diagnosis to develop a plan for your baby’s birth and treatment.
How is Spina Bifida Treated?
How is Spina Bifida Treated?
You may have to deliver the baby by cesarean section (C-section) to reduce the risk of injury. In the delivery room, your baby will be placed in a special bag to lower the risk of infection. From the delivery room, your baby will be moved to the neonatal intensive care unit (NICU) for evaluation. If you deliver your baby at Riley at IU Health, he or she will receive specialized multidisciplinary treatment from the Spina Bifida Program.
A neurosurgeon will examine your baby shortly after birth to evaluate the severity of the defect and develop a treatment plan. Many babies with myelomeningocele have hydrocephalus (a build-up of fluid and pressure in the brain). If this is the case, your baby will have a special drain called a shunt placed to drain the fluid. Not all babies with myelomeningocele will need a shunt.
While in the NICU at Riley at IU Health, all babies with myelomeningocele will also have a urinary catheter inserted to help empty the bladder. Depending on the severity of the defect, this may be temporary or long-term.
A neurosurgeon will perform surgery to correct the defect within the first two days after birth. Along with surgery to repair the spinal defect, your baby may also require additional procedures later on to address orthopedic issues and problems with the bowel or bladder.
Key Points to Remember
Key Points to Remember
- Spina bifida is a birth defect that happens when the neural tube (a layer of cells that develops into the brain and spinal cord) fails to close completely during an embryo’s first few weeks of development.
- There are four types of spina bifida: occulta, closed neural tube defects, meningocele and myelomeningocele.
- Myelomeningocele is the most severe form of spina bifida.
- Spina bifida can be diagnosed before birth. The multidisciplinary team of specialists at Riley at IU Health works with families to develop a plan for a baby's birth and treatment.
- Babies born with spina bifida require evaluation in the NICU after birth.
Support Services & Resources
Support Services & Resources
Visit the following sites to find out more about how myelomeningocele is diagnosed and treated.
Riley at IU Health offers a broad range of supportive services to make life better for families who choose us for their children's care.
The U.S. National Library of Medicine provides in-depth information about spina bifida.
The Spina Bifida Association provides in-depth information for parents of children with spina bifida.
The Spina Bifida Association of Indiana supports, educates and encourages families and individuals living with spina bifida.
The NINDS provides information about the diagnosis and treatment of the different forms of spina bifida.
Locations
Locations
Locations
In addition to our primary hospital location at the Academic Health Center in Indianapolis, IN, we have convenient locations to better serve our communities throughout the state.
Sort through 3 facilities offering Spina Bifida care by entering your city or zip below.