News & Media

February 13, 2013

By taking folic-acid supplements in early pregnancy, women may be able to significantly reduce the chances of their children developing autism, new research suggests. Read the full article



February 04, 2013

On March 13, 2013, Albert De Greve will turn 90. Albert lives in a retirement home in Sint-Niklaas (Belgium).

He has a low lesion spina bifida and no hydrocephalus. Not having hydrocephalus saved his life, because in those early days, there was no treatment for it. Children with hydrocephalus were left to die. Is Albert the oldest person living with Spina Bifida?

Are you, or do you know anyone, older, please send an email to and


July 04, 2012

By Muiris Houston

ANALYSIS: A large study on 11,000 infants will raise international interest and stimulate debates on how best to respond

THE FINDING of a significant link between poor folic acid intake and the development of cleft lip and palate (CLP) underlines the value of long-term health research in the Republic.

The Growing Up in Ireland study, a national project led by Trinity College Dublin and the Economic and Social Research Institute (ESRI), is collecting data on more than 11,000 babies and follows them as they grow older. It is producing a rich vein of original data which can be mined and explored by various researchers.

While it had been thought likely that folic acid had a role beyond that of the developing neural tube and the risk of spina bifida, previous research had failed to establish any significant linkage.

Indeed, a recent Cochrane review of the effect of folic acid on cleft lip or cleft palate found insufficient evidence to support the protective effect of folic acid. This was largely owing to insufficient numbers of cases of the defect occurring in the trials.

There is a higher than normal prevalence of CLP among pregnant women taking drugs that work against folic acid in the body, such as the anti-epilepsy agents phenytoin and phenobarbitone – an association which has long hinted at folic acid having a role in preventing CLP.

But now this large study, to be published in the British Journal of General Practice, has put the issue beyond doubt. The results will cause a ripple internationally and are likely to stimulate debate among public health specialists and general practitioners about how best to respond.

It’s a major coup for TCD’s department of public health and primary care. And the substantial long-term funding provided by the Department of Health, through the Office of the Minister for Children, must be acknowledged.

By mining the data, research student Dervla Kelly and her colleagues hit a rich seam of information connecting expectant mothers’ folic acid intake and the prevalence of CLP.

A cleft lip is a separation in the upper lip, while a cleft palate is an opening in the roof of the mouth.

Clefts result from incomplete development of the lip and/or palate in the early weeks of pregnancy. A cleft lip and palate occurs in approximately one in 700 live births. Cleft lip, with or without cleft palate, is most frequent in boys and isolated cleft palate is most common in girls.

The condition causes significant morbidity: the effects on an individual’s speech, hearing and appearance, along with psychological effects, can lead to long-lasting adverse outcomes for health and wellbeing.

Even when repaired, complications such as persistent ear infections, speech impairments, facial deformities and dental problems often persist.

Now there is an opportunity to prevent at least some cases of CLP. A daily folic acid tablet of 0.4mg taken four weeks before conception and in the first 12 weeks of pregnancy will reduce the risk of CLP by a factor of four, representing a major reduction in future morbidity.

However, there are a number of challenges to be overcome. It is estimated that up to 50 per cent of pregnancies in Ireland are unplanned, thereby denying these women the opportunity to take supplements pre-conceptually. In addition, for those planning pregnancy, it is not unusual for a baby to reach six weeks of gestation before the pregnancy is confirmed.

This opens up the old chestnut of food supplementation for the wider population. Fortifying bread with folic acid has been mooted here before.

With this new evidence of the additional benefits of folic acid, we can expect a public debate on the pros and cons of mandatory food additives. As water fluoridation has proved, these debates are rarely boring.

May 23, 2012

Most doctors and dietitians would agree that pregnancy is not the time to diet. Moms-to-be who restrict calories also deprive their developing babies of much needed nutrients.

Yet according to a new study published last week in the online edition of the BMJ, dieting during pregnancy is beneficial for some women. Controlling calories was safe and protected from a number of pregnancy-related complications.

Women who are obese during pregnancy have a greater risk of early delivery, gestational diabetes, high blood pressure and pre-eclampsia. (Also called toxemia, pre-eclampsia is marked by the onset of high blood pressure, protein in the urine and swelling (edema) after 20 weeks into pregnancy. If left untreated, it can progress to potentially life-threatening eclampsia.) For the baby, maternal obesity is a risk factor for childhood obesity.

Obesity is on the rise among women of childbearing age. What’s more, it’s estimated that as many as 40 per cent of women exceed the recommended weight gain during pregnancy.

Given these statistics, it’s important to find ways to help women manage their rate of weight gain during pregnancy.

The current study – the largest to date – combined the results of 44 randomized controlled studies conducted in more than 7000 women that investigated the impact of diet, exercise, or both on maternal and fetal outcomes related to weight.

The studies in the analysis mostly involved women who were obese and overweight. Five trials also enrolled women who were diagnosed with gestational diabetes during their pregnancy. (Gestational diabetes increases a woman’s future risk of Type 2 diabetes.) The researchers looked at how much weight women gained during pregnancy and whether mother or child experienced any complications.

While all three methods – diet only, exercise only, or the two combined – reduced a woman’s weight gain, diet had the greatest effect. Compared to women who were not assigned to a diet or exercise group (the control group), mothers-to-be prescribed a personal diet had an average reduction in weight gain of nearly 8.8 pounds (4 kg).

Exercise only resulted in an average reduction in weight gain of 1.5 pounds. A combination of diet and exercise produced an average reduction of 2.2 pounds.

Dietary advice was provided by registered dietitians and was based on limiting overall calories, balancing protein, carbohydrate and fat, and eating unprocessed foods such as whole grains, fruits, vegetables, beans and lentils. Calorie intake was individualized to the needs of the mother. The women also kept a daily food diary.

Women who followed a calorie-controlled diet were also 33 per cent less likely to develop pre-eclampsia compared to controls. As well, the risk of gestational diabetes was 60 per cent lower, the risk of gestational high blood pressure was 70 per cent lower, and the risk of early delivery was 32 per cent reduced.

There’s concern that limiting calories – and nutrients – during pregnancy can result in low birth weight, putting a baby at risk for infection, developmental delays and health problems later in life.

Babies born under 5.5 pounds are considered low birth weight babies. Low birth weight can result when babies are born early (before 37 weeks gestation), are small for their gestational age, or both.

In the study, however, the babies’ birth weights were not affected by controlling calorie intake.

The current findings show that by carefully advising women on diet during pregnancy, excess weight gain can be prevented, helping to reduce the risk of complications for mother and baby.

Nutrition is a critical component to a healthy pregnancy. The following strategies are important to protect the health of both moms-to-be and their developing babies.

Monitor weight gain

Weight gain guidelines during pregnancy are based on a woman’s body mass index (BMI) before pregnancy. Women with a healthy pre-pregnancy BMI (18.5-24.9) are advised to gain 25 to 35 pounds.

Women who are overweight (BMI 25 – 29.9) should gain 15 to 25 pounds while obese women (BMI 30 or greater) should gain only 11 to 20 pounds.

Women with a BMI of less than 18.5 are advised to gain 28 to 40 pounds. Use an online calculator to determine your BMI.

If you’re concerned about gaining too much or too little weight during pregnancy, consult with a registered dietitian who can design a meal plan customized to meet calorie needs.

Take folic acid

All women who could become pregnant, who are pregnant, or who are breastfeeding should take a daily multivitamin with 0.4 to 1 milligram of folic acid, a B vitamin that’s vital to preventing neural tube defects (NTDs) in the developing fetus.

NTDs are serious birth defects caused by the incomplete development of the brain, spinal cord and/or their protective coverings that occurs around the fourth week of pregnancy.

Taking a multivitamin during pregnancy may also guard against low birth weight and childhood cancer in offspring including leukemia, brain tumours and neuroblastoma.

Pregnant women should also add folate-rich foods to their diet such as lentils, black beans, cooked spinach, broccoli, asparagus, avocado, and artichokes.

Increase iron

During pregnancy daily iron requirements increase from 18 to 27 milligrams. Choose a multivitamin with 16 to 27 milligrams of iron.

Iron-rich foods include beef, shrimp, sardines and trout, legumes, pumpkin seeds, enriched breakfast cereals, nuts, raisins and prune juice.

Women who are iron-deficient or who are vegetarians may require additional iron.

Get omega-3 fats.

I advise my pregnant clients to eat five to 12 ounces of oily fish each week to increase their intake of DHA, an omega-3 fat important for brain and eye development during pregnancy and breastfeeding.

Fish rich in omega-3’s and low in mercury include salmon, trout, sardines, herring and Atlantic mackerel.

Women who don’t eat fish should consider taking a fish oil supplement. Vegetarian DHA supplements are also available.

Leslie Beck, a Toronto-based dietitian, is the national director of nutrition for Body Science Centers, medical clinics focusing on healthy aging (

May 22, 2012


KENNEDALE, Texas — Two-month-old Kellen has eyes only for mommy, and not because she gladly put herself in mortal peril in order to give him the best chance at life.

When Claire Davis was 19 weeks pregnant, she and husband Justin Davis learned more than the gender of their third child.

"I could kind of sense that something was up, because the sonogram technician was taking a really long time, and this was not our first rodeo," Claire said. "I knew what to expect going in there, and it was not what I expected. Then it really was not what I expected."

"It" was spina bifida, the most common permanently disabling birth defect in the United States. About 1,500 babies are born with spina bifida annually, according to the Centers for Disease Control.

Taking folic acid before and during pregnancy has been shown to reduce the incidence of spina bifida, though no one knows for sure what causes the defect.

Even hearing the words "spina bifida" prompts shivers of fear in expectant mothers.

An MRI scan of baby Kellen shows the developmental defect at the bottom of his spine, which is open and exposed to amniotic fluid.

"We think that the damage is due to the spinal cord elements being exposed to the untrauterine amniotic fluid and also the baby moving around," explained Dr. Darrell Cass, a fetal surgeon at Texas Children's Hospital in Houston. "We think that that contributes to ongoing damage."

Common complications of spina bifida include paralysis and brain damage.

"All the potential complications that go along with spina bifida... I was definitely scared," Justin Davis said.

Then, the Davises learned about a hopeful — but dangerous — surgery possible in Houston, one that could correct the spine before the baby is ever born.

"Losing Kellen," Claire paused. "That would've been awful. But going into it, you try not to think of it too much."

In an operating room at Texas Children's Fetal Center, Claire Davis was put under a deep anesthetic.

Doctors then cut the uterus open, like a C-section, and manipulated the baby's exposed spine through the opening in the uterus. A surgeon operated on the baby through that tiny space, closing the spine, and tightly sealing the uterus shut.

"And then — very importantly — we have to close that uterus up, with stitches and keep it pregnant and keep the baby inside the uterus," Dr. Cass said. "And we have to have it so it doesn't leak that amniotic fluid and that the pregnancy can continue, and that's where this becomes very tricky and pretty difficult."

"So by closing these lesions, we're hoping to prevent ongoing injury, and hopefully preserve neurologic function," said Texas Children's OB/GYN Dr. Michael Belfort. "And even in some cases, we believe it's possible to regain some neurologic function."

Children born with spina bifida can have their spines enclosed just after birth. By then, the damage can already be serious.

Many children with spina bifida develop hydrocephalus, water that must be drained from the brain. That condition can cause complications, including serious infections.

The in-utero surgery is very risky, but could help children avoid the most serious complications of spina bifida.

An MRI taken post-surgery showed Kellen's spine was sealed and his brain was developing normally. He now has just a scar to show for the operation.

"He is perfect," his proud mother and father said. "He is wonderful."

Kellen does have two club feet, a common condition for spina bifida babies. Kellen's are being corrected with casts.

In fact, his little legs are so strong, he's already kicked his casts off once. It's an inconvenience that makes his parents smile, considering he could have been born paralyzed.

Now, his parents have hopes they will one day see Kellen running with his brother and sister.

"[I hope] that he be able to walk, run, play," Justin said. "Do everything he's supposed to do."

April 25, 2012

A coalition of six organizations including vitamin giant DSM has petitioned the FDA to allow corn masa flour to be fortified with folic acid in a bid to decrease neural tube defects in the Hispanic community.

April 25, 2012

A half dozen medical and advocacy groups have petitioned the FDA to require the addition of folic acid to corn masa flour products, such as tortillas, in order to help prevent birth defects in babies born to Hispanic women.

Hispanic women are about 20% more likely to have a child with a neural tube defect than non-Hispanic white women, explained the American Academy of Pediatrics, the March of Dimes, the Spina Bifida Association, and several other groups in their petition to the FDA.

Although the reasons are not fully understood, it might be because Hispanic women eat less folic acid-enriched bread and pasta than white women, the groups said.

The prevalence of neural tube defects has dropped by about a third since 1998 when the FDA began mandating that certain grains -- including corn meal, wheat flour, rice, macaroni, and bread -- be enriched with folic acid.

But corn masa flour -- made from specially treated corn and used to make foods common in Latin American diets, including corn tortillas and tamales -- are not covered by the FDA mandate.

Many countries in Latin America already fortify corn masa products with folic acid, according to a press release issued by the March of Dimes.

"We've seen the success with fortifying cereal grains with folic acid," said Jennifer Howse, MD, President of the March of Dimes, in the press release. "Adding folic acid to corn masa flour can successfully decrease neural tube defects in the Hispanic community. 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."

The CDC advises that women of childbearing age should take a daily multivitamin containing folic acid as part of a healthy diet that includes leafy green vegetables and fortified foods to reach the recommended 400 daily micrograms of folic acid.

The FDA said it does not comment on petitions its receives.

By Emily P. Walker, Washington Correspondent, MedPage Today

October 18, 2011

“Dramatically reduce your risk of having a baby with a neural tube birth defect like spina bifida by taking a daily multi-vitamin with folic acid prior to conception and during pregnancy.”

This is the vital message that the Spina Bifida & Hydrocephalus Association of Ontario (SB&H) wants all women of childbearing age to hear. Spina bifida is a neural tube birth defect (NTD) that occurs within the first four weeks of pregnancy – before most women know they are pregnant. The spinal column fails to develop properly, resulting in permanent damage to the baby's spinal cord and nervous system. Spina bifida is the most common permanently disabling birth defect in Canada affecting one in every 1,300 babies.

“The solution to dramatically reducing this high rate of incidence is relatively simple,” states Joan Booth, Executive Director, SB&H. “Taking just 0.4 mg of folic acid daily in a multivitamin, prior to conception and during pregnancy, can reduce the risk of NTDs like spina bifida by as much as 70%.”

Unfortunately, while most women have heard of folic acid, only 38% understand that folic acid must be taken before conception to help reduce the risk of NTDs, according to a recent Health Canada survey. In addition, more than half of women in Ontario between the ages of 18 and 40 do not take a daily multivitamin whether they are planning to get pregnant or not. “With so many unplanned pregnancies,” Booth says, “It should be part of a woman’s daily routine, like brushing her teeth.

”SB&H is working to get the word out through their EVERY HEALTHY BABY IS A VICTORY education campaign and a new website dedicated to this program. While the primary target of this campaign is women of childbearing age, special attention is given to women with compromised health conditions, and those at greater risk due to insulin dependent diabetes, obesity, epilepsy, prior affected pregnancies and a family history of NTDs. provides information about sources of folic acid from food and supplements, how much is required, when it should be taken and who should take it, as well as a separate section for healthcare professionals. The site includes articles of interest and a discussion area where women can share experiences and post questions. Women requiring more information can also call a toll-free help line: 800-387-1575.

Nature’s Bounty has taken a lead role as the gold sponsor of the website. “Ensuring that women get the most up-to-date information and products to help in the prevention of neural tube birth defects like spina bifida is a key goal of Nature’s Bounty,” says Julie-Anne McCallum, Brand Manager, Nature’s Bounty. “We’re proud to be a sponsor to help launch this very important campaign.” SB&H is pleased to announce that Burnbrae Farms is also supporting the website to encourage healthy eating of foods enriched with folate.


October 06, 2011

Investigators will study how environmental risk factors like a folic acid deficiency increase risk for spina bifida and related congenital defects.

NEW YORK (Sept. 26, 2011) — The National Institutes of Health (NIH) has awarded a five-year, $5.5 million Transformative Research Project (T-R01) Award to fund research into risk factors for spina bifida and related congenital defects in which an area of the affected baby's spine or brain is not fully enclosed.

The research will be led by Dr. Margaret Elizabeth Ross and Dr. Christopher E. Mason at Weill Cornell Medical College. Dr. Ross is the director of the Laboratory of Neurogenetics and Development and professor and vice chair for research in the Department of Neurology and Neuroscience, and Dr. Mason is an assistant professor of computational genomics in the Department of Physiology and Biophysics and at the HRH Prince Alwaleed Bin Talal Bin Abdulaziz Alsaud Institute for Computational Biomedicine. They will work in collaboration with Dr. Richard H. Finnell of the University of Texas at Austin.

The award to Dr. Ross and Dr. Mason is among 79 awards totaling $143.8 million that were recently announced by the NIH. It is also one of only 17 given in the transformative research category in 2011. According to the NIH: "The Common Fund's NIH Director's Transformative Research Award initiative, formerly known as the Transformative Research Project (TR01), is created specifically to support exceptionally innovative and/or unconventional research projects that have the potential to create or overturn fundamental paradigms."

Spina bifida and other serious neural tube defects (NTDs) develop from a complex interaction between genetic and environmental factors in which the environment influences how the fetus' genetic blueprint is read during development. One critical influence is the addition of methyl groups to DNA that can make it less likely that the modified, methylated gene will be used to make the protein it encodes. The Weill Cornell study seeks to identify which among all the genes in the cell are modified by folic acid levels, and how those patterns can be used to assess individual risk for having a child with spina bifida, or other serious NTDs. They will compare DNA from patients with NTDs with DNA from healthy patients with the ultimate goal of developing more individually targeted and more effective prevention strategies.

The U.S. Public Health Service recommends that all women capable of becoming pregnant should consume folic acid to reduce their risk for having a pregnancy affected by spina bifida and other NTDs. Folic acid is in most multivitamins and many foods, including vegetables like broccoli and spinach, and fruits and juices such as orange juice. Some foods also have folic acid added to them, like certain breakfast cereals and other bread and grain products. Research at Weill Cornell will address questions of how folic acid protects against neural tube defects, how the need for folic acid varies with the genetic makeup of an individual, and whether there are alternative supplements, perhaps working elsewhere in the same pathway as folic acid, that would more effectively promote healthy birth outcomes by providing a patient-specific genetic test before pregnancy begins.

In addition to the Weill Cornell award, three research scientists at Cornell University in Ithaca received a five-year Transformative Research Projects Award (T-R01) of approximately $3.04 million to fight cancer by targeting the regulation of metabolic enzymes. Drs. Richard A. Cerione, professor of pharmacology in the Department of Molecular Medicine, College of Veterinary Medicine, and professor of chemistry and chemical biology in the College of Arts and Sciences; Hening Lin, assistant professor of chemistry and chemical biology; and Robert S. Weiss, associate professor of molecular genetics in the College of Veterinary Medicine, are working on the project, "Succinylation and Malonylation as Novel Protein Modifications in Cancer." The research will focus on a new set of regulatory modifications that occur on proteins and which appear to be important to cancer progression, explain the researchers.

"More specifically, we believe that these modifications help to activate proteins that are responsible for meeting the hefty energy requirements of cancer cells. Thus, if we can block these modifications and the activation of the metabolic proteins, the cancer cells will not be able to meet their energy needs and hopefully die," says Dr. Cerione.

February 28, 2011

A revitalized website designed to build awareness around the benefits of folic acid and reduce the risk of neural tube defects has been launched by The Spina Bifida & Hydrocephalus Association of Ontario. The new site features a question of the month, the latest news and research reports, personal stories and more. View the full news release.