About Spina Bifida

Young girl with Spina Bifida.

Learn About Spina Bifida

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. Commonly referred to as the “snowflake condition” of birth defects because no two cases are the same, Spina Bifida can range from mild to severe. The severity depends on everything from the size of the opening to the location on the spine.

Spina Bifida Quick Facts

Causes of Spina Bifida

Doctors and scientists believe that a complex mix of both genetic and environmental factors act together to cause Spina Bifida. Every woman of childbearing age is at risk of having a pregnancy affected by a birth defect. These factors present themselves very early in the pregnancy, as early as the fourth week. Although the exact causes of Spina Bifida are unknown, research has found folic acid can aid in preventing neural tube defects like Spina Bifida. 

Diagnosing Spina Bifida

Spina Bifida can be detected in utero by one of the following tests:

Blood test: An expectant mother can take a blood test called the alpha-fetoprotein (AFP screening test) which is administered during the 16th to 18th week of pregnancy. 

Ultrasound: When an expectant mother receives an ultrasound, also called a sonogram, the doctor will be able to see images of the fetus and possible signs of Spina Bifida, like an open spine.

Maternal Amniocentesis: This is a test where a small amount of fluid can be taken from the expectant mother’s womb through a thin needle. It can be used to look at protein levels which can indicate a diagnosis of Spina Bifida.

It is important to remember that no medical test is perfect and some results are not always accurate. 

Types of Spina Bifida

Although no two cases of Spina Bifida are identical, there are three main types of Spina Bifida which are the most common.

Spina Bifida – Myelomeningocele: This form of Spina Bifida can be seen as a sac of fluid on the baby’s spine. It can be either open or closed, with the spinal cord and/or nerves exposed or concealed by the sac. Because of this, part of the spinal cord and nerves are typically damaged. This damage may affect how a person uses their extremities, goes to the bathroom, and functions overall.

Spina Bifida – Meningocele: This form of Spina Bifida can also be seen as a sac of fluid on the baby’s spine. The difference between this and Myelomeningocele is that the spinal cord and/or nerves do not protrude into the sac. However, this type of Spina Bifida may still cause changes in the person’s abilities.

Spina Bifida – Occulta: This form of Spina Bifida is considered the most mild form, as it typically presents no symptoms and is rarely identified at birth, if at all. When the condition is found, it is typically later in life and through incidental finding when taking other tests. This type of Spina Bifida leaves a small gap in the spine. But, it is possible to have this type and not have it affect any of the person’s abilities.

Treating Spina Bifida

Because there are different types of Spina Bifida and levels of severity, treatment should be individualized. The following are initial treatments that may be done based on the type of Spina Bifida the baby is born with. Often, people with Spina Bifida will receive various surgeries, therapies, and have multiple medical appointments across their lifespan to manage their health.

Secondary Conditions