What is spina bifida? Why are Vietnam veterans concerned about it?

Spina bifida is the most frequently occurring permanently disabling birth defect. It affects approximately one of every 1,000 newborns in the United States. Neural tube defects (NTD) are birth defects that involve incomplete development of the brain, spinal cord, and/or protective coverings for these organs. Spina bifida, the most common NTD, results from the failure of the spine to close properly during the first month of pregnancy. (Anencephaly and encephalocele are less common types of NTDs). In severe cases, the spinal cord protrudes through the back of and may be covered by skin or a thin membrane.

Some Vietnam veterans have children with spina bifida. While Vietnam veterans and their mates are now moving out of the age category usually associated with childbirth, it is anticipated that some future births will occur and that some of these children may have birth defects, including spina bifida. Some research efforts have suggested that there may be a relationship between exposure by Vietnam veterans to Agent Orange and/or other herbicides used in Vietnam and the subsequent development of spina bifida in some of their children.

What can be done for children with spina bifida?

Surgery to close the infant'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. 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. Spina bifida is also associated with bowel and bladder complications.

Many individuals with spina bifida also suffer with hydrocephalus, fluid in the brain. Hydrocephalus is controlled by a surgical procedure which relieves the fluid build up by redirecting it to the abdominal area.

Because of medical advances, most children born with spina bifida live well into adulthood.

What did the National Academy of Sciences (NAS) conclude about the relationship between exposure to herbicides and the development of spina bifida in its 1993 report, entitled Veterans and Agent Orange - Health Effects of Herbicides Used in Vietnam?

While there were several references to spina bifida in this 832-page report, the condition was grouped with all other birth defects. The NAS reviewers concluded that there is "inadequate or insufficient evidence" to determine whether an association exists between exposure to herbicides use in Vietnam and birth defects among offspring.

What did the 1996 NAS update conclude about spina bifida?

In 1996, the NAS commented that published results of the analysis of birth defects among the offspring of the Operation Ranch Hand (the Air Force unit responsible for most of the Agent Orange spraying) personnel "suggest the possibility of an association between dioxin exposure and risk of neural tube defects."

The NAS reviewers noted that a number of studies of veterans "appear to show an elevated relative risk for either service in Vietnam or estimated exposure to herbicides or dioxin and neural tube defects (anencephaly and/or spina bifida) in their offspring."

NAS noted that while the Centers for Disease Control (CDC) Birth Defects Study revealed no association between "overall Vietnam veteran status" and the risk of spina bifida or anencephaly, the CDC herbicide "exposure opportunity index," based on interview data, indicated an increased risk of spina bifida in the children of Vietnam veterans who had high index ratings. There was no similar pattern of association for anencephaly.

The CDC Vietnam Experience Study indicated that more Vietnam veterans reported that their children had a central nervous system disorder (including spina bifida) than did non-Vietnam veterans who participated in the study.

The NAS observed that all three of these epidemiologic studies (which are of the "highest overall quality") suggest an association between herbicide exposure and an increased risk of spina bifida in offspring. While the NAS took note of the weaknesses in each of these studies, the NAS report concluded that there is "limited/suggestive evidence" of an association between exposure to herbicides used in Vietnam and spina bifida. On the other hand, the NAS found "inadequate or insufficient evidence to determine whether an association exists" between exposure to the herbicides and "all other birth defects."

What was VA's response to the NAS finding regarding spina bifida?

While Secretary Brown could easily add peripheral neuropathy and prostate cancer (two other "limited/suggestive evidence" conditions cited in the 1996 update) to the list of conditions recognized by VA for presumption of service connection for Vietnam veterans based on exposure to herbicides, VA lacked the authority to provide benefits to non-veterans based on the possible relationship between those individuals' disabilities and a veteran's service.

On May 28, 1996, President Clinton announced that VA would send to Congress proposed legislation that would provide an "appropriate remedy" for Vietnam veterans' children who suffer from spina bifida. On July 25, 1996, Secretary Brown sent to Congress a draft bill that would provide for the special needs of these children through the provision of comprehensive medical care, vocational training, and monetary benefits (monthly allowance). On July 28, 1996, the legislation was introduced in the Senate and House of Representatives. In September, Congress approved a similar version of the spina bifida legislation with an effective date of October l, 1997, as part of the VA FY1997 appropriations bill. It became Public Law 104-204 on September 26, 1996, when it was signed by President Clinton.

On May 24, 1996, VA announced a "solicitation for applicant to establish a research center for epidemiological, clinical, and basic science studies of environmental hazards and their effects on reproductive and developmental outcomes." On November 14, 1996, VA announced that the Louisville VA Medical Center was selected as the site of this center.

Where can a veteran get additional information about spina bifida?

Some information regarding spina bifida and related matters can be obtained at VA medical center libraries in other medical libraries, from the Registry Physicians at every VA medical center, or from the Environmental Agents Service (131), Department of Veterans Affairs, 810 Vermont Avenue, N.W., Washington, DC 20420. Non-government organizations, such as the Spina Bifida Association of America (SBAA), Easter Seal Society, and the March of Dimes, also have a great deal of information. The SBAA is located at 4590 MacArthur Blvd., Suite 250, Washington, DC 20007-4226. The toll-free telephone number for SBAA is (800) 621-3141. The e-mail address is spinabifda@aol.com.