WEDNESDAY, Feb. 22, 2006 (HealthDay News) -- Alicia Clendennin of Quaker Hill, Conn., was 18 weeks' pregnant when routine blood tests revealed her unborn child had a high risk of suffering some sort of birth defect.
Clendennin, now 47, went for an ultrasound, and doctors described what they were seeing as they ran the device over her belly.
"That's when they saw the opening in his back and determined that he did have spina bifida," Clendennin said of the test, performed 11 years ago. "They explained to me right then what they were finding."
Clendennin, a nurse by training and these days an administrator for a home care company, said she couldn't believe what she was hearing. She'd been taking folic acid for years. She'd avoided alcohol. She's not overweight and doesn't smoke.
But her instincts told her the diagnosis was true.
Spina bifida is a neural tube defect, or a birth disorder involving incomplete development of the brain, spinal cord or their protective coverings, according to the U.S. National Institutes of Health. It is caused by the failure of the fetus's spine to close properly during the first month of pregnancy, and at its most extreme can cause paralysis and mental retardation.
Birth defects form, in most cases, extremely early, so the steps a woman can take to try to ensure a healthy pregnancy should be taken far in advance of conception, experts say.
"Many birth defects form during the embryonic period, before a woman even realizes she's missed her first period," said Amy Case, who represents a program that monitors birth defects for the Texas Department ofState Health Services.
"Before she can say, 'Oh I'm pregnant, I need to take of myself,' the damage may be done," added Case, who also serves as secretary/treasurer of the National Birth Defects Prevention Network.
It's a tough concept to grasp and keep in mind, studies have shown.
For example, the number of American women taking folic acid supplements -- one of the easiest ways to prevent serious birth defects of the brain and spine -- decreased from 40 percent in 2004 to 33 percent in 2005, according to a March of Dimes study.
But half of all pregnancies in the United States are unplanned, Case said. That means all women of childbearing years owe it to themselves -- and their potential offspring -- to do what they can to prevent birth defects.
"Women who can become pregnant should take very good care of their bodies," she said. "Many of the things they can do need to be done really before they conceive."
About one in 33 infants in the United States is born with a birth defect, and the causes of most defects remain a mystery.
Folic acid has been associated with the prevention of neural tube defects like spina bifida and anencephaly, or incomplete brain formation.
Doctors recommend that women take a vitamin containing 400 micrograms of folic acid every day to prevent these defects from occurring. Again, for the folic acid to work most effectively, it should be in a woman's diet prior to conception.
"You really need to have the folic acid taken on a regular basis three months prior to conception," DaSilva said. "Pregnancy is not a nine-month event. It should be considered a one-year event, with the first months spent preparing your body."
The number of women taking folic acid shot up when the March of Dimes conducted a public campaign for the supplement's use in the late 1990s, DaSilva said. But those numbers have slowly slipped over time.
"Like with everything, unless it's always in the spotlight people have short memories," DaSilva added.
"Someone who plans to have a baby should see a pediatrician, discuss her medical status and review what medication she is taking so the baby won't have birth defects," DaSilva said.
DaSilva also urges women to educate themselves about the ways they can better care for themselves and, as a result, their child-to-be.
Clendennin's pregnancy was difficult: she went into premature labor three times, and spent the last 10 weeks of the pregnancy in bed, resting, trying to give her unborn son a chance to grow as big as possible before she delivered him.
Three hours after Morgan was born, he underwent surgery to close his back.
He's had 14 surgeries since, 12 of them before he was 2 years old. Most of the surgeries dealt with neurological issues caused by hydrocephalus, a secondary defect discovered after his birth that causes excessive fluid in the brain. Shunts were placed in his head to drain off the excess fluid.
Because of these surgeries, and aggressive action taken by his doctors early on, Morgan now is living a mostly normal life.
Morgan has no signs of mental retardation, Clendennin said. He's in braces from the ankles down, but is able to walk without any assistive equipment at all.
The boy is an avid skier, hitting icy, expert slopes without fear, his mother said. He's also shown an artistic side, enjoying theater and art and singing.
Clendennin said knowing what was in store for her son before he was born helped her plan for the good care he's gotten since.
"I really believe it's important to have the prenatal testing done so you know what's going on with the child and you can make important decisions," she noted. "If you know in advance, you can pick your hospitals. You can pick your surgeons. You can pick your method of delivery."
To learn more, visit the March of Dimes.