What is Spina Bifida?
About Spina Bifida
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Spina Bifida is the most common permanently disabling birth defect that is associated with life. Approximately 166,000 individuals in the United States have Spina Bifida.
It’s a type of neural tube defect (NTD) that occurs when a baby’s neural tube fails to develop or close properly – the literal meaning for Spina Bifida is “split spine.” Typically occurring within the first 28 days of pregnancy while the neural tube is forming, Spina Bifida often occurs before a woman knows she is pregnant.
Every person who experiences Spina Bifida has a unique experience. No two cases are the same, Spina Bifida can range from mild to severe. The severity depends on factors such as the size of the opening, the location on the spine, and the type of Spina Bifida.
What Causes Spina Bifida?
No one knows for sure. Doctors and scientists believe that a complex mix of both genetic and environmental factors act together to cause the condition.
Are you an expectant parent?
Click below for resources and information that might be of benefit to you and your child.
Can Spina Bifida Be Detected Before Birth?
While no medical test is perfect and the results are not always 100% accurate, Spina Bifida can be detected in utero by one of the following tests:
- A test to measure the level of alpha-fetoprotein (AFP screening test)
- An ultrasound or sonogram of the fetus
Types of Spina Bifida
Myelomeningocele
This is the most severe form of Spina Bifida. It happens when parts of the spinal cord and nerves come through the open part of the spine. It causes nerve damage and other disabilities. Seventy to ninety percent of children with this condition also have too much fluid on their brains, also known as Hydrocephalus. Learn more about Hydrocephalus and Spina Bifida.
Spina Bifida Occulta
It is often called “hidden Spina Bifida” because about 15 percent of healthy people have it and do not know it. Many people don’t receive a diagnosis until they have an X-Ray of their back. Many people with SBO experience pain and other neurological symptoms. Learn more about SBO.
Meningocele
Meningocele causes part of the spinal cord to come through the spine like a sac that is pushed out. There is fluid in the sac, and there is usually no nerve damage. Individuals with this condition may have some disabilities.
How is Spina Bifida treated?
Treatment for Spina Bifida depends on the severity of the condition. Below are the ways in which Spina Bifida is treated before or shortly after birth.
- A child with myelomeningocele usually is operated on within two to three days of birth. This prevents infections and additional damage to the spinal cord.
- A child with meningocele usually is treated with surgery, and more often than not, the child is not paralyzed. Most children with this condition grow up without complications, but they should be checked by a doctor because they could have other serious problems, too.
- A child with OSD should see a surgeon. Most experts think that surgery is needed early to keep nerves and the brain from becoming more damaged as the child grows.
- Spina Bifida occulta typically does not require treatment.
Prevention
While there is no known cause, it has been shown that women who are old enough to have babies should take folic acid before and during the first three months of pregnancy. Because half of the pregnancies in the United States are unplanned, the Spina Bifida Association asks women to take a vitamin with 400 mcg (0.4 mg) of folic acid each day during the years of their lives when they are possibly able to have children.
Spina Bifida is usually not caused by something the parents did or did not do.
Additionally, women who have a child or sibling with Spina Bifida, have had an affected pregnancy, or have Spina Bifida themselves should take 4000 mcg (4.0 mg) of folic acid for one to three months before and during the first three months of pregnancy. It’s important to know that neural tube defects like Spina Bifida are not entirely understood, and Spina Bifida is usually not caused by something the parents did or did not do. It is recommended that adults with Spina Bifida and couples who already have a child with Spina Bifida talk with their OB-GYN or genetic counselor about their risk factors and ways to reduce the risk.
