Spina Bifida and Anencephaly

Spina bifida and anencephaly are serious birth defects that occur when a baby’s spinal cord or brain does not develop properly during early pregnancy.  These are called neural tube defects.  Anencephaly babies do not survive, while babies born with spina bifida face a high probability of death in early childhood, require ongoing medical and surgical care, and are often confined to life in a wheelchair.

These birth defects place significant emotional and financial burden on families, affecting children from all economic and ethnic groups.

The brain and spinal cord are formed during the first 28 days of pregnancy, often before a woman knows she is pregnant.  Thus, to prevent these birth defects, an intervention must occur before conception and continue through early pregnancy.

Globally, it is estimated that 300,000 births are affected by these neural tube defects each year.  Of those births, 240,000 would be due to folic acid deficiency.  Current prevention efforts are able to prevent about 35,000 cases, leaving close to 200,000 affected births that could be prevented each year.  This number represents 20 times the total number of babies harmed by thalidomide 60 years ago, yet thalidomide (a drug initially prescribed to prevent nausea in early pregnancy) was quickly removed from use.

The solution to prevent folic acid-preventable spina bifida and anencephaly has been known for 25 years – provide sufficient folic acid to women of child-bearing age.  Yet to date there has not been a well-planned, funded, and coordinated global program to eliminate these birth defects, as there has been for other conditions, such as polio.  The high count and severity, in the face of an achievable solution, is why the Center for Spina Bifida Prevention at Emory University is focusing on the problem.