News Moms Need

Anifa is an 18-month-old girl who was born with spina bifida, a serious birth defect of the spine. Like many children with spina bifida, Anifa is paralyzed and has no bowel or bladder control. She lives with her family in a village in Nigeria where there is no primary health center to help her. As a result, Anifa could not have surgery to close the opening in her spine until she was nine months old. During this time, her spinal cord was exposed and without protection. In the U.S., the first surgery for a baby born with spina bifida usually takes place within the first 24 hours of life to avoid complications or death. But Anifa had no choice but to wait.

In the United States, children born with spina bifida often live long and productive lives, even though they face many challenges. In many other countries, however, the outlook for children like Anifa is not as positive.

The Centers for Disease Control and Prevention (CDC) first began researching folic acid’s role in preventing birth defects in the early 1980s. Early studies found the risk for having a baby with a neural tube defect (NTD), such as spina bifida, was reduced if the mother had taken folic acid before and during early pregnancy. As a result, U.S. Public Health Service released the 1992 recommendation that all women who could become pregnant should get 400 micrograms (mcg) of folic acid every day.

Women can get folic acid in three ways: diet, vitamin supplements, and flour fortification. Experts agreed that getting 400 mcg of folic acid from naturally-occurring food sources alone was impractical—women would have to eat a lot of folate-rich foods which are expensive and not readily available in many communities.

In January 1998, in response to requests from the CDC and its collaborators, including the March of Dimes, the FDA mandated fortification of cereal grain products labeled as enriched in the United States. “At that point, we had what we thought was the best possible coverage of women of child-bearing age to get folic acid for the prevention of neural tube defects,” says former CDC scientist Joe Mulinare. With a 36 percent reduction in the rates of neural tube defects by the end of 2006, folic acid fortification was recently named one of the Ten Great Public Health Achievements in the United States.

Folic Acid Awareness Week is January 6-12th, 2013. We are honored to have this guest post from the CDC. Author: Christina Kilgo, MA, Health Communication Specialist and SciMetrika contractor for CDC’s National Center on Birth Defects and Developmental Disabilities.

Did you know that Hispanic women are about 20 percent more likely to have a child with a neural tube defect (NTD), which includes spina bifida and anencephaly, than non-Hispanic white women?  Although the reasons for the disparity are not well understood, Hispanic women have been found to have lower intake of the B vitamin folic acid overall compared to non-Hispanic white women. 

Serious birth defects of the brain and spine in America’s babies, particularly those of Hispanic origin, could be reduced if the nation’s corn masa flour products were fortified with folic acid, according to a new petition filed with the U.S. Food and Drug Administration (FDA) by a coalition of six organizations:
• Gruma Corporation
• Spina Bifida Association
• March of Dimes Foundation
• American Academy of Pediatrics
• Royal DSM N.V.
• National Council of La Raza

Fortification of enriched cereal grains such as bread and pasta with folic acid was mandated by the FDA in 1998. Corn masa flour, however, lacks federal regulatory approval for the addition of folic acid. The rate of NTDs in the U.S. has decreased by nearly one-third since fortification. Despite this success, about 3,000 pregnancies in the U.S. still are affected by NTDs annually and Hispanics have the highest rate when compared to other race or ethnic groups.

Corn masa flour is made from specially treated corn and is used to make products common in Latin American diets such as corn tortillas and tamales. The petitioners believe that by targeting traditional Hispanic food made with corn masa for folic acid fortification, it would be possible to lower the rate of NTDs among Hispanics, particularly Mexican-Americans. Studies have shown that folic acid works if taken before conception and during early pregnancy. Many countries in Latin America already allow fortification of corn masa products with folic acid, including Costa Rica, El Salvador and Mexico.
 
The FDA accepted the petition on April 17. The petition now will be reviewed by the agency, which is not required to follow a prescribed timetable on the approval process. “Adding folic acid to corn masa flour can successfully decrease neural tube defects in the Hispanic community,” said Dr. Jennifer Howse, President of the March of Dimes.  “This is a safe and effective way to address the disparities we see in the Hispanic community and will give even more babies a healthy start in life. I’d like to thank our fellow petitioners for their leadership on this important health issue. We look forward to the FDA’s determination on our petition.”

We’ll keep you posted on their response.

A targeted or advanced ultrasound usually follows after a standard ultrasound if the provider has seen something questionable and wants to take a closer look at it. This exam is more thorough than a standard ultrasound and can take from 30 minutes to a couple of hours. Among other things, it provides a more detailed view of the baby’s head and spine and is 95% effective in diagnosing neural tube defects like spina bifida. It includes a full body scan measuring all of the long bones, identifying major organs, including the heart and brain, nose and mouth.

Doppler imaging is a technique that can measure tiny changes occurring within the body, such as the speed and direction of blood flow. Sound waves bounce off moving red blood cells and produce an image of blood flow, something a standard ultrasound cannot do. Women with high blood pressure may receive an ultrasound with Doppler imaging of the umbilical artery to see if the blood flow to the baby or placenta is as it should be or if it is being compromised in some way.

Fetal echocardiography uses ultrasound to take a closer look at a developing baby’s heart. It offers a far more detailed view of the heart and provides information about its structure and rhythm. Women who are at increased risk of having a baby with a congenital heart defect may be offered this scan. It can provide valuable information about the anatomy and function of different parts of the heart, such as the valves, and is often used to rule out a possible problem rather than find one. If a heart defect is found, further body scanning for other possible defects will be recommended. Problems with fetal heart rhythms can be treated during pregnancy but structural defects require treatment, possibly surgery, after the baby is born. Knowing about a heart defect in advance will help ensure the baby is born in a medical center equipped to perform specialized medical treatment on the baby shortly after birth.

Pregnant women who learn that their developing baby has a birth defect of the spine, spina bifida, wish so much that there was something to be done that could help prevent the disabilities that come with this disorder. Often long-term survivors of spina bifida have paralysis and bowel and bladder dysfunction. In the past, doctors had to wait until after the baby was born to try to correct improper development, but by then much of the damage was irreversible. Today, however, surgery can be performed on some of these babies while they are still developing in the womb, giving them a better chance at avoiding disabilities later.

Scientists have been studying fetal surgery for years. Just recently, an exacting, multi-year, randomized clinical trial has shown that surgery on babies with a form of spina bifida produced much better outcomes if performed before birth rather than afterward.  Follow-up studies of the children showed that by the age of 12 months, far fewer babies who had fetal surgery required cerebrospinal fluid shunts. By the age of 30 months, these babies were more likely to walk without orthotics or devices and had fewer neurological problems than those who had corrective surgery after they were born.  It is believed that the early surgical repair allowed for more normal prenatal nervous system development.

This surgery is not without its risks.  It does increase the chance of premature rupture of the membranes, preterm birth, uterine scar defects and it mandates cesarean delivery in all subsequent pregnancies.

This exciting study, published in the New England Journal of Medicine on February 9th, is likely to generate interest in the possibility of other surgical procedures performed before birth.

For those of you who are pregnant, sometime between 15-20 weeks of pregnancy, you will be offered maternal serum screening.  What is this?  And more importantly, what do the results mean?  I think maternal blood screening is one of the most misunderstood tests in pregnancy.  And for some women it can be a very nerve-wracking experience. 

The American College of Obstetricians and Gynecologists (ACOG) recommends that all pregnant women regardless of age be offered a screening test for Down syndrome and certain other birth defects.  This is a blood test that looks at the levels of either 3 or 4 (depending on the test) chemicals that are present in a pregnant woman’s blood.  The chemicals are AFP (alpha fetoprotein), hCG (human chorionic gonadotropin—the same chemical that a home pregnancy test measures), estriol, and recently most labs have added a fourth substance, inhibin A.  These chemicals are present in every pregnant woman’s blood.  Some of them are produced by the fetus while others are hormones produced by the placenta. 

Maternal serum tests such as the triple screen or the quad screen as they are commonly called, look at the levels of these 3 or 4 chemicals in the mother’s blood and the woman’s age, weight, race, number of fetuses (e.g. twins) and whether she has diabetes that requires insulin treatment.  Then given all of those factors and the levels of the 3 or 4 chemicals the laboratory can determine the chance that a woman has a baby with Down syndrome, a neural tube defect (spina bifida), trisomy 18, or abdominal wall defects.

There are two different ways that the results may be reported.  A woman may receive her test result as a ratio. For example, her baby has a 1 in 500 chance for Down syndrome. Or, in some cases, a woman’s test results are reported as normal (screen negative) or abnormal (screen positive), depending on whether her results fall below or above a cut-off point (usually about 1 in 270).

The test is NOT a diagnosis of any of these conditions though.  This is where there is a lot of confusion.  By definition, screening tests do not diagnose a condition.  They only determine whether there is an increased risk for the condition.  The good news is that of all of the women who screen positive, only a small percentage will actually have a baby with one of these disorders.  Many times women have an abnormal result simply because their fetus is a few weeks older or younger than previously thought.  

For women with abnormal results, the next step is usually an ultrasound. This test can check the gestational age of the fetus and show if a woman is carrying multiples. If either of these factors accounts for the abnormal test result, no further testing is needed. If ultrasound does not explain the abnormal test result, amniocentesis will be offered.  An amniocentesis is an invasive test where the doctor uses a needle to remove some of the amniotic fluid around the baby.  Although amnio does pose a very slight risk of miscarriage (1/4 of one percent or 1/500), it is extremely accurate and usually can give a pregnant woman a definitive answer.  Should a problem exist, arrangements can be made in advance for special care of the newborn at delivery.

Not enough American women understand that consuming the B vitamin folic acid every day can help prevent serious birth defects and that they should take it before they become pregnant. Did you? 

Studies show that if all women consumed the recommended amount of folic acid before and during early pregnancy, up to 70 percent of all birth defects of the brain and spine known as neural tube defects (NTDs), such as spina bifida, could be prevented.  The most recent March of Dimes survey revealed that only 28 percent of women of childbearing age knew folic acid can prevent birth defects and only 11 said they knew that folic acid should be consumed prior to pregnancy.  Wow, those are really low numbers for something so important!

This January, as part of National Birth Defects Prevention Month, we’re trying to remind all women of child-bearing age of this really important role folic acid plays in preventing birth defects. Daily consumption of the B vitamin folic acid beginning before pregnancy is crucial because NTDs can occur in the early weeks following conception, often before a woman knows she is pregnant. 

We urge all women of childbearing age to consume 400 micrograms of folic acid daily.  Bread, crackers, bagels, pasta, pretzels and tortillas made from fortified, enriched white flour are popular and important sources of folic acid.  In fact, enriched grain products have been fortified with twice the amount of folic acid found in whole grain products. Other good sources are leafy green veggies like spinach and kale, dried beans, legumes, oranges and orange juice.  And you’ll find it in a daily multivitamin, too. 

Taking folic acid as part of your daily routine before, during and after pregnancy is a great New Year’s resolution!

Today is the first day of National Folic Acid Awareness Week. Folic acid is a B vitamin that can help prevent birth defects of the brain and spinal cord called neural tube defects (NTDs). Folic acid works to prevent these birth defects only if taken before conception and during early pregnancy.

Because NTDs originate in the first month of pregnancy, before many women know they are pregnant, it is important for a woman to have enough folic acid in her system before conception. Folic acid is recommended for all women of childbearing age because about half of all pregnancies in the United States are unplanned.

We have a helpful video on folic acid that is apart of our Healthy Pregnancy, Healthy Baby video series. Click here to watch.

January is Birth Defects Prevention Month. The National Birth Defects Prevention Network’s Education and Outreach Committee developed a 2009 Birth Defects Prevention Month Packet focusing on “Obesity Prevention and Weight Management – Before, During, and After Pregnancy”. The packet materials are available by clicking here.  These resources can be shared with colleagues, policy makers, families, and others during Birth Defects Prevention Month and throughout the year.

New research suggests that women who take a daily multivitamin containing 400mcg (micrograms) of folic acid for at least one year before they become pregnant can reduce their risk of having a premature baby by half. Click here to read the article, Huge Drop in Preterm Birth-Risk Among Women Taking Folic Acid One Year Before Conception.

Folic acid (synthetic form of a B vitamin) is also important for the development of the fetus’s neural tube, which becomes its brain and spinal cord. A lack of folic acid may result in a severe birth defect called a neural tube defect (NTD). Women who are or may become pregnant are encouraged to take folic acid supplements in addition to eating foods high in folate. Folic acid may also reduce the risk of stroke, colon cancer and breast cancer.

For more information about getting healthy before pregnancy watch the video, Don’t U Dare.