Each year an average of 4,900 Kentucky babies are born with a birth defect, often leading to health complications, disability or possibly death.
Georgetown’s Mary Beth Long, who works with the state’s Spina Bifida Organization is a passionate advocate for the continued need for services, research and education to prevent birth defects. Her 9-year-old daughter, Abbie, was born with spina bifida, a birth defect that occurs when the spine and spinal cord do not form properly.
“My advocate role has taken an even larger step to where I get to cover the entire state, not just my own home,” said Long, explaining her work with the association and desire to spread education and information. “We want people to take folic acid. …. Research has proven taking folic acid each day can reduce the chances of having a child with a neural tube defect or even a birth defect.”
Mary Beth, Abbie and Bryan Long recently discussed their family’s experience with spina bifida in an interview as part of the Kentucky Department for Public Health (DPH), within the Cabinet for Health and Family Services, World Birth Defects Day promotion and outreach. The Longs talk about the prevalence of birth defects, challenges they have faced and the need for continued education and awareness for an issue that remains prevalent throughout the U.S.
According to DPH, a baby is born with a birth defect every four and a half minutes in the United States, although research has shown that defects can be prevented with the adoption of healthy habits and lifestyle choices prior to pregnancy.
“Most people are unaware of how common, costly and critical birth defects are in the United States, or that there are simple steps that can be taken to reduce them,” said Monica Clouse, coordinator for the Kentucky Birth Registry Surveillance program.
The risk for many types of birth defects can be reduced through healthy lifestyle choices and medical care before and during pregnancy.
In addition to spina bifida, many different kinds of birth defects exist, including congenital heart defects; cleft lip or palate; defects of the brain and spine; defects of the bones, muscles and internal organs; and a variety of genetic syndromes such as Down syndrome. Some have only a minor and brief effect on a baby’s health, while others have life-threatening or life-long effects, which can often be lessened by early detection and treatment.
Studies have demonstrated several important steps women can take to help prevent birth defects.
Women who are pregnant or may become pregnant are advised to:
Consume 400 micrograms of folic acid daily.
Manage chronic maternal illnesses such as diabetes, seizure disorders or phenylketonuria (PKU).
Maintain a healthy weight.
Talk to a health care provider about taking any medications, both prescription and over-the-counter.
Avoid alcohol, smoking and illicit drugs.
See a health care provider regularly.
Avoid toxic substances at work or at home.
Ensure protection against domestic violence.
Know their family history and seek reproductive genetic counseling, if appropriate.
To learn more about Kentucky’s outreach efforts, contact Kentucky’s Birth Surveillance Registry Program at 502-564-4830 ext. 4394 or kbsr@ky.gov.
