What Is Spina Bifida?
Over 250,000 Americans are in the Spina Bifida community. An estimated 70,000 people in the United States are currently living with Spina Bifida, the most common permanently disabling birth defect. Spina Bifida is a neural tube defect that happens in the first month of pregnancy when the spinal column doesn't close completely. In severe cases, the spinal cord protrudes through the back and may be covered by skin or a thin membrane. Surgery to close a newborn's back is generally performed within 24 hours after birth to minimize the risk of infection and to preserve existing function in the spinal cord. There are 65 million women at risk of having a baby born with Spina Bifida. Everyday, an average of 8 babies is affected by Spina Bifida or a similar birth defect of the brain and spine. Each year, about 3,000 pregnancies are affected by these birth defects.
The effects of Spina Bifida are different for every person. Up to 90 percent of children with the most severe form of Spina Bifida have hydrocephalus (fluid on the brain) and must have surgery to insert a "shunt" that helps drain the fluid - the shunt stays in place for the lifetime of the person. Other conditions include full or partial paralysis, bladder and bowel control difficulties, learning disabilities, depression, latex allergy, and social and sexual issues.
Thanks to new medical treatments and technology, most people born with Spina Bifida can expect to live a normal life. People with Spina Bifida have many special challenges because of their birth defect, but their condition does not define who they are. People with Spina Bifida have careers, get married and have children just like people who don't have Spina Bifida.
Three Types of Spina Bifida
Occulta
Often called hidden Spina Bifida, the spinal cord and the nerves are usually normal and there is no opening on the back. In this usually harmless form of Spina Bifida, there is a small defect or gap in a few of the small bones (vertebrae) that make up the spine. It can take the form of a dimple or small hair growth on the back. However, many people are unaware that they have Spina Bifida occulta, as they display absolutely no symptoms of the condition.
There may be no motor or sensory impairments evident at birth, subtle, progressive neurologic deterioration often becomes evident in later childhood or adulthood.
In many instances, Spina Bifida occulta is so mild that there is no disturbance of spinal function at all. Occulta can be diagnosed at any age.
Meningocele
The protective coatings (meninges) come through the open part of the spine like a sac that is pushed out. Cerebrospinal fluid is in the sac and there is usually no nerve damage. Individuals may suffer minor disabilities. New problems can develop later in life.
Myelomeningocele
This occurs when the meninges (protective covering of the spinal cord) and spinal nerves come through the open part of the spine. This is the most serious type of Spina Bifida, which causes nerve damage and more severe disabilities. Here the sac or cyst not only contains tissue and cerebro-spinal fluid but also nerves and part of the spinal cord. The spinal cord is damaged or not properly developed. As a result, there is always some degree of paralysis and loss of sensation below the damaged vertebrae. The amount of disability depends very much on where the Spina Bifida is and the amount of nerve damage involved. Many children and adults with this condition experience problems with bowel and bladder control.
Because of the paralysis resulting from the damage to the spinal cord, people born with Spina Bifida may need surgeries and other extensive medical care. The condition can also cause bowel and bladder complications. A large percentage of children born with Spina Bifida also have hydrocephalus, the accumulation of fluid in the brain. Hydrocephalus is controlled by a surgical procedure called "shunting" which relieves the fluid build up in the brain by redirecting it into the abdominal area. Most children born with Spina Bifida live well into adulthood as a result of today's sophisticated medical techniques.
How often does Spina Bifida occur?
Spina Bifida occurs in 7 out of every 10,000 live births in the United States. Birth certificate data from the National Vital Statistics System, a component of the Centers for Disease Control and Prevention (CDC), National Center for Health Statistics (NCHS), indicate a drop in the rate of Spina Bifida; however, Spina Bifida is considered to be underreported on birth certificates so the drop in the rate could be due to lack of reporting, not an actual decrease in occurence. In addition, a number of Spina Bifida pregnancies are voluntarily terminated and we cannot be certain how many pregnancies are terminated versus carried to term.
Who is at risk for Spina Bifida?
In the United States, there are 65 million women of childbearing age and each one is potentially at risk of having a pregnancy affected by Spina Bifida. Birth defects can happen in any family. In fact, 95 percent of neural tube defects (NTDs) occur in women with no personal or family history of NTDs. However, according to the CDC, some risk factors are known:
A previous NTD-affected pregnancy increases a woman's chance to have another NTD-affected pregnancy approximately 20 times
Maternal insulin-dependent diabetes
Use of certain anti-seizure medication (Valproic acid/Depakene, and Carbamazapine/Tegretol)
Medically diagnosed obesity
High temperatures in early pregnancy (i.e., prolonged fevers and hot tub use)
Race/ethnicity (NTDs are more common among white women than black women and more common among Hispanic women than non-Hispanic women)
Lower socio-economic status
What can be done to reduce the risk?
Studies have shown that if all women who could become pregnant were to take a multivitamin with the B-vitamin folic acid, the risk of neural tube defects could be reduced by up to 70%. Folic acid is a water soluble B-vitamin that helps build healthy cells. Because it is water soluble, folic acid does not stay in the body for very long, so women need to take it every day to help reduce the risk of neural tube defects.
Since half of all pregnancies in the United States are unplanned, women of childbearing age - even if they are not currently planning to get pregnant - should take 400 micrograms (mcg) of folic acid every day to reduce their risk of having a child with Spina Bifida. In addition, women who have experienced a pregnancy affected by a NTD like Spina Bifida need a larger prescription dose of 4000 (mcg) of folic acid daily when planning a pregnancy.
