A Personal Story:

Birth Defects and Folic Acid

“It was just surreal; you don’t ever expect it to happen to you. We were faced with this thing we never imagined we’d be faced with,” said Maggie as she recounted her family’s experience with a neural tube defect (NTD)-affected pregnancy.

A few years after having a healthy baby boy, Maggie became pregnant with her second child. “The pregnancy was going fine and there didn't seem to be any troubles; life was great,” remembered Kevin, Maggie’s husband. However, 18 weeks into the pregnancy, Maggie’s obstetrician gave the family some shocking news. He informed them that their baby had a condition called anencephaly, a fatal NTD in which part of the brain is ming or exposed.

Maggie and Kevin were faced with a decision most of us cannot even begin to imagine and quickly came to realize just how vulnerable anyone can be in this type of situation. No one in Kevin or Maggie’s family had a history of any type of birth defect, and Maggie had done everything her obstetrician recommended to ensure a healthy pregnancy. Something they once thought only happened to other people actually became a reality for their family.

Several months after the pregnancy, Maggie and Kevin met with a pediatric genetic counselor and learned about folic acid and its importance. Maggie knew it was important to take prenatal vitamins during pregnancy, but she did not recognize folic acid as a component of the vitamins until after her experience.

In the months following her pregnancy, she learned it is important to have folic acid in your system prior to conception since many women do not realize they are pregnant until after the neural tube is completely developed. Maggie also learned that if she began planning another pregnancy, she may be at greater risk for having another baby with an NTD. She would need to take extra doses of folic acid to help protect her from another NTD-affected pregnancy.

Maggie followed the recommendation to take folic acid before conceiving. Shortly after her visit with the genetic counselor, Maggie became pregnant with her third child, Grace, who is now a healthy, athletic little girl.

After Grace was born, Maggie began her involvement with the March of Dimes. The family was contacted about having Grace become the “ambassador” for the North Central Florida Chapter of the March of Dimes. The family accepted and Grace was named the March of Dimes poster child in 1999.

After Grace became the poster child for the March of Dimes, the family was contacted by a group of OB/GYN nurses to share their story with another family who was facing a similar situation. The family agreed because they believe it is “nice for people to see another family on the other side of the situation and to realize that life goes on and you can get through it.”

A few years later, Maggie and Kevin had their fourth child; a healthy little girl named Annie. Today, Maggie sits on the board for the Florida Chapter of the March of Dimes, and she helps to raise money at Shands at the University of Florida (UF) through bake sales and other campaigns.

Kevin recalls how persistent and dedicated she is to the cause each year. The family also made a trip to the capital in Tallahassee in 2000 to help with the lobbying effort for the development of the Birth Defects Registry. They acted as the “face” of a family who was affected by an NTD to show others that it can happen to anybody and no one is immune to such a situation.

In addition, the family’s teenage son, Danny, has walked in the March of Dimes for nine consecutive years, and Maggie has participated in studies on the factors affecting folic acid absorption in the Food Science and Human Nutrition Department at UF. In 2006, the family accepted an invitation to serve as the spokes-family for the Florida Folic Acid Coalition to promote National Folic Acid Awareness Week.