Children's Hospital Colorado

Spina Bifida

What is spina bifida?

The spinal cord’s main function is to send messages to and from your brain – messages to your brain concerning the temperature of your body, pain and touch, as well as messages from your brain controlling bodily movements and other functions.

Spina bifida literally means “split spine.” In babies born with spina bifida, the spine never completely wraps around the spinal cord, leaving an opening in the spine. Because of the opening in the spine, the nerves of the spinal cord may be damaged. A spinal cord that's damaged may not be able to do the important job of getting messages to and from the brain.

What are the types of spina bifida?

There are three types of spina bifida: spina bifida occulta, meningocele and myelomeningocele. These types of spina bifida range in severity from completely harmless and undetectable until an x-ray is performed later in life, to the spinal cord protruding uncovered from the back. Your team of specialists at Children’s Hospital Colorado will work together to individualize testing and treatment for your child.

What causes spina bifida and can it be prevented?

Although spina bifida is one of the most common forms of birth defects, there is no known cause for it. However, researchers have found possible links to its causes.

One of those links is in pregnant mothers who have a folic acid deficiency. Because the abnormal growth that leads to myelomeningocle begins during the first trimester, it is recommended that women looking to become pregnant begin taking a folic acid supplement as soon as possible. Mothers who are already pregnant should start taking a folic acid supplement as soon as they find out they are pregnant. Folic acid is also known as folate, folacin and vitamin B.

A second link specific to mylemeningocele is found in siblings of affected children. A mother who has had one baby with myelomeningocele has a 3% chance of giving birth to another child with mylemeningocele. The risk is higher if she has had more than one previous baby born with myelomeningocele.

Even though researchers have discovered links in causes for spina bifida, there is not definitive evidence.

Resources for spina bifida:

What are the signs and symptoms of spina bifida?

Children with spina bifida occulta or meningocele usually grow up without any long-term health effects, but you should still be aware of the health conditions that may occur later in life. Unfortunately, children with myelomeningocele are at a much higher risk of these long-term health effects.

Children with myelomingocele will have varying degrees of paralysis depending on the level that the spinal cord did not form normally. They will also have bowel and bladder incontinence.

At delivery, babies may show partial to permanent weakness or paralysis of the hips, legs and feet. There could also be loss of bowel and bladder control, and loss of sensation in hips, legs and feet. Some children will be able to walk with the help of a walker, braces or crutches. Babies with myelomeningocele have an 80% chance of being born with hydrocephalus (water on the brain), which can result in learning disabilities, coordination problems, visual problems and epilepsy.

How is spina bifida diagnosed?

Around 15 weeks gestation, an OBGYN will draw a mother’s blood to test for different chemical markers that occur naturally during pregnancy. If the test comes back positive (marker levels are too high), the baby has a higher chance of having a birth defect such as myelomeningocele, Down syndrome or other brain or spinal condition.

Following a positive result, the OBGYN will decide if an ultrasound should be done to diagnose the baby correctly, or if the mother should be sent to a high-risk pregnancy institute like the Colorado Fetal Care Center.

How is spina bifida treated?

Treatment for occult

If your baby is born with spina bifida occulta, you may not find out about it until the baby has grown into a child and happens to receive an x-ray. Even then, some types of this condition are not found until adulthood. This can be a normal variant and does not usually cause any problems.

Treatment for meningocele

If your child has a meningocele, treatment could include surgery, which may be performed to remove the bulge. Tests before and after surgery could include x-rays, CT scan or an MRI. These babies typically grow up with no long-term health effects.

Treatment for myelomeningocele

If your baby has myelomeningocele, treatment will include surgery to repair the bulge and cover the exposed spinal cord and nerves. Prior to and following surgery, doctors at Children’s Hospital Colorado will test the baby’s response to different sensations to check for paralysis in different areas of the baby’s lower body. Additional tests could include x-rays, CT scans and an MRI. These types of tests may go on well after the baby is out of the hospital, and some will experience treatments and tests for the rest of their lives. Although surgery will not repair any nerve damage, the child is expected to live a long life.

A baby born with myelomeningocele and hydrocephalus may have to have a shunt inserted to carry the excess fluid “on the brain” down to the abdominal cavity, which will absorb the fluid. Most shunts are permanent. Babies who are born with myelomeningocele may have to have continued treatment as they get older. This may include treatment of bowel and bladder function, orthopedic treatment and physical therapy, as well as regular check-ups from his or her pediatrician for other problems. Problems that may occur as the child gets older could include developmental, neurological and physical delays. 

Why choose Children’s Hospital Colorado for my child’s spina bifida?

At Children’s Colorado, patients with spina bifida are followed closely in a multi-specialty clinic. That means that an entire team of experts are committed to your child’s care, including rehab and physical medicine specialists, orthopedic surgeons, neurosurgeons, urologists and geneticists. We also work with physical therapists, orthotists, wheelchair vendors, psychologists and social workers – all in a single visit. This allows your child to get all his or her needs taken care of in one day.

Children's Colorado also offers an Adaptive Recreation for Childhood Health program for children with Spina Bifida and other conditions. Learn how this program can help children with Spina Bifida lead a lifetime of healthy leisure and awareness.