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Published: Tuesday, October 28, 2003
Publication: The Sun-Sentinel
By: Kathleen Kernicky
Excited about becoming a mother, Emily Gonzalez-Abreu
watched her diet and got plenty of rest when she was pregnant.
None of that prevented her daughter, Angeline, from
developing spina bifida, a crippling birth defect that occurs when the spine of
the fetus fails to close properly during the first weeks of pregnancy.
Gonzalez-Abreu, whose daughter is now 3, got another shock
this summer when she heard for the first time at a medical conference that
Hispanic women face the highest risk of a spina-bifida pregnancy.
Although Gonzalez-Abreu took a prenatal vitamin, she did so
inconsistently, unaware of the added risk or importance of taking the B-vitamin
folic acid every day. Folic acid can reduce the risk of neural tube defects
such as spina bifida by up to 70 percent.
"I was surprised and angry," says Gonzalez-Abreu,
36, a high-school guidance counselor who is Cuban-American and lives in
Hollywood with her daughter and her husband, Manny. "I was doing all these
things that I thought I needed to do. If I'd known I had a predisposition for
having a child with this disorder, I would have done something about it, which
was to take the folic acid consistently."
According to the Centers for Disease Control and Prevention
(CDC), the spina bifida rate among Hispanics is 5.02 per 10,000 live births,
compared to 4.42 per 10,000 births among non-Hispanic whites. Black and Asian
women have the lowest rates.
A Florida study in the late 1990s showed that neural tube
defects developed among Hispanics at a rate of 6.6 incidents per 10,000 live
births, compared to an overall rate of 5.9 per 10,000 births. The rate nearly
doubled or tripled among Hispanic women who were born outside the United
States, with Mexicans showing the highest risk.
No one is certain why, although diet and genetics are
thought to play a role. Health agencies such as the CDC that are tracking the
trend are so alarmed they've launched a folic-acid public awareness campaign,
targeting Hispanics, on the importance of taking the B-vitamin before and
during pregnancy.
Although children like Angeline can make great progress, the
consequences of spina bifida can be devastating.
When Emily Gonzalez-Abreu was told her daughter had spina
bifida, she took a dramatic step: Choosing to have maternal fetal surgery
during her 23rd week of pregnancy. During the procedure, doctors temporarily
remove the mother's uterus while they close the lesion in the baby's spine,
stopping damage to the nerves. In Angeline's case, there was a lesion about 2
inches long on her lower back. Without the surgery, she likely faced paralysis
from the waist down.
The surgery was successful. But Angeline, born six weeks
premature, still faced seven surgeries during her first six months of life,
including inserting a shunt in her head to expel extra fluid.
For the first year, her life revolved around doctors and
nurses, hospital stays and trips to the emergency room. She didn't walk with a
walker until she was 15 months old. She had trouble with fine-motor skills,
like pressing down on a crayon.
"We were always trying to play catch-up," says
Gonzalez- Abreu.
Gonzalez-Abreu, who has lobbied legislators in Washington,
D.C., wants doctors and health-care workers to tell Hispanic women of the
higher risk and the importance of folic acid.
A public-awareness campaign launched by the CDC began in
Miami and San Antonio and has expanded to Denver and Philadelphia. In Miami's
Little Havana, promotoras (which means to promote) spread the word about folic
acid in Spanish and English. Celebrities such as Daisy Fuentes do
public-service announcements.
"In immigrant communities, that can be complicated by
language, diet or cultural barriers," says Alina Flores, a health
education specialist at the CDC. "Our goal is to increase their knowledge
and awareness of folic acid and the importance of taking it before they become
pregnant, or even attempt to become pregnant. We've learned a lot of the women
will pay attention to their doctors."
Promotoras such as Rosa M. Carranza, a nutritionist at the
Little Havana Activities and Nutrition Centers, spread the word at doctors'
offices, clinics and health fairs. Carranza talks to women in the waiting room
or the day-care center.
Carranza uses a mobile van to travel to low-income immigrant
and migrant communities. There, she finds women who don't get any prenatal care
until their second or third trimesters. Health-care workers face more pressing
issues, and the folic-acid message gets lost.
"The women that we're targeting, we've found, are the
ones who know the least about folic acid. At the same time, they're at the
highest risk. My first question is, `Who knows about folic acid?' Some have
heard of it, but they don't know what it's about.
"The best way to get the point across is have the women
sitting across from me, face to face, even if it's only for five minutes. If we
don't have that opportunity, we'll leave the information with them. We tell the
women they have to be our promotoras themselves. `Please, go out and tell other
women.'"
According to Laura Williams, epidemiologist at the CDC
Division of Birth Defects and Developmental Disabilities, there may be a
genetic difference that causes Hispanics to metabolize folic acid differently.
Or, Hispanic women may consume a lower amount of folic acid in their diet,
particularly immigrants who may buy more food products made outside the United
States.
Why would that matter?
In 1996, the federal government mandated that enriched grain
products be fortified with folic acid. That, in part, is credited with a 31
percent drop in spina bifida rates between 1995 and 1999 in the United States.
"It's very clear that folic acid works," Williams
says. "We did see a significant decline in the rate of neural tube defects
and spina bifida after fortification. There may be a leveling off in the rates,
but we are not seeing an increase."
Exactly how folic acid works is uncertain. It is known to
help build healthy cells and assist with DNA production, making it important
during periods of rapid cellular development.
Because folic acid does not stay in the body for long, women
should take it every day to reduce the risks of birth defects.
The Spina Bifida Association of America recommends that all
women of child-bearing age take a multivitamin with a daily dose of 400
micrograms of folic acid, regardless of whether a pregnancy is planned. (Check
the label for folic acid or folacin.)
Women with a family history or previous spina-bifida
pregnancy should take a higher prescription dose of 4,000 micrograms. Folic
acid is most effective when it is taken one to three months before conception,
and through the first trimester of pregnancy.
"Our research shows that many health-care professionals
are not familiar with specific recommendations," says Adriane Griffen,
director of public health programs at Spina Bifida Association of America.
"We're trying to educate women to be their own advocates so they're armed
with the information and can bring it to their providers."
At age three, Angeline Gonzalez-Abreu loves going to public
preschool. She walks with the help of short plastic braces that are hidden
beneath her socks. She colors with a crayon, cuts with a pair of scissors and
likes to climb up on the couch or a table. She's a social butterfly and
fascinated by books.
"She wants to do what the other kids are doing,"
her mother says. "Every day, she's surprising us. I credit the [fetal]
surgery and my faith. A lot of people prayed for Angeline."
For more information about spina bifida, click on www.angelinemarie.com
Kathleen Kernicky can be reached at kkernicky@sun-sentinel.com or
954-356-4725.
