Birth Defects COUNT

Countries and Organizations United for Neural Tube Defects Prevention

Birth Defects COUNT is CDC’s global initiative to significantly reduce death and lifelong disability resulting from neural tube defects.

What are neural tube defects and why are they a public health concern?

Neural tube defects are serious birth defects of the brain and spine. They are a major cause of death and lifelong disability worldwide.

• The two most common neural tube defects are spina bifida (defect of the spine) and anencephaly (defect of the brain). They happen very early in pregnancy when the neural tube, which becomes the brain and the spine, does not close properly.
  • Spina bifida can cause lifelong disabilities that range from mild to severe.
  • Almost all babies born with anencephaly will die shortly after birth.
• In the United States, 3,000 pregnancies are affected by neural tube defects every year (1).
• Hispanic women have higher rates of neural tube defects than non-Hispanic women in the United States. (2)
• Worldwide there are more than 300,000 babies born with neural tube defects each year. (3)
• The total lifetime direct cost of care for a child born in the United States with spina bifida is estimated to be $791,900. (4)

What has been done?

CDC has worked to prevent neural tube defects over the past two decades and has led the way in folic acid research. Folic acid, a B vitamin, is known to reduce the risk of a pregnancy being affected by a neural tube defect when a woman takes 400 micrograms daily before and during early pregnancy. By 1998 in the United States, folic acid was added to all cereal grain products labeled as enriched, like breakfast cereals and corn grits. This process is called folic acid fortification. Before folic acid fortification, about 4,100 pregnancies were affected by a neural tube defect each year in the United States. After fortification, this number declined to about 3,000. The number of deaths each year due to neural tube defects also declined from 1,200 before folic acid was added to 840 after folic acid was added. (1)

Expanding Worldwide Efforts

CDC’s National Center on Birth Defects and Developmental Disabilities is working with the World Health Organization and other partners on a global initiative, Birth Defects COUNT, to reduce death and lifelong disability due to neural tube defects. The three focus areas of Birth Defects COUNT are science, partnerships, and public health policy.

1. Science. Develop and strengthen regional and in-country abilities to monitor birth defects, and develop and strengthen laboratory capacity to measure the amount of folic acid present in the blood (or blood folate levels).
2. Partnership. Engage a global network of partners who are experts in conducting folic acid interventions, birth defects prevention, and surveillance activities.
3. Policy. Educate and inform decision-makers on the benefits of fortification policies for neural tube defects prevention.

CDC’s efforts support the United Nations Millennium Development Goal 4 to reduce the mortality rate of children under-five and improve efforts to prevent neural tube defects.

Public Health Impact

• Increasing folic acid intake among women of childbearing age can help prevent 150,000-210,000 of the more than 300,000 neural tube defects that occur each year in low- and middle-resource countries. (5)
• With partners, CDC will help to
  • Improve tracking of neural tube defects and other birth defects;
  • Monitor fortification efforts; and
  • Improve ways to measure the amount of folic acid needed in the blood to prevent neural tube defects.

References

1. CDC. Spina Bifida and Anencephaly Before and After Folic Acid Mandate — United States, 1995–1996 and 1999—2000. MMWR 2004; 53(17): 362-365.
2. Williams LJ, Rasmussen SA, Flores A, Kirby ES, Edmonds LD. Decline in the prevalence of spina bifida and anencephaly by race/ethnicity: 1995-2002. Pediatrics. 2005 Sep:116(3):580-6.
3. Shibuya K, Murray CJ. Congenital anomalies. In: Health dimensions of sex and reproduction: the global burden of sexually transmitted diseases, HIV, maternal conditions, perinatal disorders, and congenital anomalies. Murray CJ, Lopez AD, eds. Boston, Massachusetts: the Harvard School of Public Health on behalf of the World Health Organization and the World Bank; 1998:455-512.
4. Grosse SD, Berry RJ, Tilford JM, Kucik JE, Waitzman NJ. Retrospective assessment of cost savings from prevention: Folic acid fortification and spina bifida in the U.S. American Journal of Preventive Medicine. January 2016 [epub ahead of print].
5. CDC. CDC Grand Rounds: Additional Opportunities to Prevent Neural Tube Defects with Folic Acid Fortification. MMWR 2010; 59(31);980-984.