Through population-based birth defects surveillance programs, CDC tracks the number of pregnancies affected by spina bifida in the United States. This way, we can find out if the number is rising, dropping, or staying the same.
We can also compare the birth prevalence relative to where people live and by other factors. This information can help us look for risk factors and causes.
Since folic acid fortification in the mid-1990s, population-based birth defects surveillance programs have been able to document a decline in the birth prevalence of spina bifida in the United States. In addition, with the advances in medical treatment, more infants born with spina bifida are surviving and thriving than in past years. However, information on the population-based prevalence of children and adolescents with spina bifida is still limited.
Over the past few years, CDC, along with state birth defects surveillance programs, has been conducting an evaluation to look at the number of children and adolescents with spina bifida in ten regions of the United States, as well as their survival rates. This project will provide information that might be useful in deliberations on the public health impact of spina bifida beyond infancy.
Most recent estimates indicate about 1,500 babies (1 out of every 2,800) are born with spina bifida each year in the United States.
MACDP is a population-based surveillance system for birth defects, including spina bifida, among fetuses, infants, and children born to residents of metropolitan Atlanta. It was the nation's first population-based surveillance system to actively track birth defects.
CDC funds 14 states to track major birth defects, including spina bifida, and uses the data to help direct birth defects prevention activities and refer children affected by birth defects to needed services.
The NBDPN is a group of individuals involved in birth defects surveillance, research, and prevention. The Network assesses the impact of birth defects, including spina bifida, on children, families, and the healthcare system; identifies factors that can be used to develop primary prevention strategies; and assists families and their providers in the prevention of secondary disabilities.
The National Birth Defects Prevention Study (NBDPS) is one of the largest U.S. studies looking at risk factors and potential causes of birth defects, including spina bifida.
Because many types of birth defects occur at such low rates, it is difficult to conduct studies that include enough children with specific birth defects. NBDPS has 9 study sites, and gives us a unique opportunity to create a study group large enough to determine what environmental, genetic, and behavioral factors cause or contribute to specific birth defects.
Spina bifida is one of the most common permanently disabling birth defects in the United States. Spina bifida happens when the spine and back bones do not close all the way in a fetus (a baby still in the mother's womb). A sac of fluid comes through the opening in the baby's back. Much of the time, part of the spinal cord is in this sac, and it is damaged. This damage may occur within the first few weeks of pregnancy, often before a woman knows she is pregnant.
Arkansas teens and young adults with spina bifida exhibit unhealthy behaviors that continue as they age into their late 20s. These unhealthy behaviors may include eating less healthy diets, smoking cigarettes, drinking alcohol, using illegal drugs, and substance abuse. Nearly 90% of those aged 16-31 from Arkansas had a doctor visit in the year prior to the survey, indicating that the potential for screening and counseling for health risk behaviors and depression is large. These findings highlight the need to increase awareness and offer mental health screenings and professional counseling to those affected by spina bifida.
