North Carolina Folic Acid Council and the March of Dimes Celebrate Spina Bifida Awareness Month
Posted: 10-03-2008 : RALEIGH, N.C.

Raleigh, N.C. -- One in every 1,970 babies in North Carolina is born with spina bifida, a severe birth defect of the brain and spine. The North Carolina Folic Acid Council and the March of Dimes are recognizing October as Spina Bifida Awareness Month by highlighting the occurrence of the birth defect and offering recommendations to decrease the chances of developing spina bifida. Current recommendations advise every woman of child bearing age--even those who are not planning a pregnancy--to take a multivitamin with 400 mcg of folic acid every day.

Spina bifida occurs when the spine of a baby fails to close properly. It occurs during the first month of pregnancy before a woman knows she is pregnant. Spina bifida may lead to paralysis or other disabling problems. An estimated 70,000 to 130,000 people in this country currently live with spina bifida, the most common permanently disabling birth defect in the United States.

“Spina Bifida Awareness Month helps us educate the public and increase understanding of what it’s like to live with spina bifida and how to prevent it,” says Amy Mullenix, MSW, MSPH, Statewide Coordinator for the North Carolina Folic Acid Campaign. “It’s essential that people are aware that spina bifida affects a startling number of people in the United States and that 50 to 70% of cases could be prevented with adequate folic acid intake before pregnancy.”

Spina bifida is not one condition; it is a multitude of problems that affect the mind, body and spirit. Advancements in treatment and prevention, however, have opened new doors for those with spina bifida. While it presents unique challenges, those affected by spina bifida are able to attend school, work, raise a family, and spend time with friends just like everyone else. The root cause of spina bifida is unknown and the effects for each person are different. Hispanics have an abnormally high rate of occurrence. In North Carolina, Latina/Hispanic women are twice as likely to have a baby born with a neural tube defect (NTD), than any other race or ethnicity.

In the Triangle area, a new support group has formed to help parents of children in with spina bifida. A new member of the Folic Acid Council, Anna Romanosky, DPT, is a pediatric physical therapist at Raleigh Neurology Associates, P.A. and she started the support group after realizing that there are not a lot of resources available for these families.

Romanosky and her partner, Nazaly Miller, PT, currently treat six children with spina bifida at their practice. Many families they work with are middle-income so they don’t qualify for subsidies or state programs.

“I just started networking, and talking to anyone I could. It seemed that a lot of people were waiting for something like this to happen,” Romanosky said.

Romanosky decided to start a support group for these families, and so far the effort has paid off. The first meeting was held on September 4 and seven parents attended. “It went really well. It was amazing to see the parents interact,” Romanosky said.

The group decided that it would focus on starting a free equipment exchange so that parents can swap out expensive equipment, since children with spina bifida often need numerous pieces of equipment that they grow out of quickly. They will also focus on providing support to pregnant women whose babies have been diagnosed with spina bifida in utero, as well as advocating for more services and resources to those with spina bifida.

The support group will also encourage prevention since more than half of spina bifida cases could be prevented if every woman of child bearing age was to take a multivitamin with 400 mcg of folic acid every day before pregnancy. The North Carolina Folic Acid Campaign is providing the support group with free materials and information that they can use at health fairs and other events.

The next support group meeting is scheduled for Oct. 16 in Raleigh. All families who have a child with spina bifida are encouraged to attend. For information about the meeting or to start a support group in your area, please contact Anna Romanosky, DPT, at 919-420-1682 or at aromanosky@raleighneurology.com.

To find out more about how you can become a member of the Folic Acid Council, contact Megan Fazekas at 919-781-2481 or by e-mail at mfazekas@marchofdimes.com. For more information about the NC Folic Acid Campaign, or to order free materials, visit www.getfolic.com.

About the North Carolina Folic Acid Campaign
The North Carolina Folic Acid Campaign is a statewide program whose mission is to improve health by promoting the benefits and consumption of folic acid by taking a daily multivitamin. Established in 1994, the program advocates that all women of child bearing age take 400 mcg of folic acid daily to help prevent neural tube defects (NTDs). Through its collaboration and partnership, the March of Dimes and the North Carolina Folic Acid Council have made significant progress in the campaign to reduce NTDs. To learn more, visit www.getfolic.com and www.marchofdimes.com.

About the March of Dimes
The March of Dimes is the leading nonprofit organization for pregnancy and baby health. With chapters nationwide and its premier event, March for Babies, the March of Dimes works to improve the health of babies. For the latest resources and information, visit marchofdimes.com or nacersano.org.