“Disability is not inability”: preventing birth defects through fortification, one grain at a time

Photos: Juliana and her daughter, Phoebe, are champions for fortification of staple foods with folic acid.

"It's a different life, but once you accept it, life goes on,”

says Juliana Auma Okoth, founder of the Spina Bifida and Hydrocephalus Association of Kenya (SHAK). Juliana is the proud mother of Phoebe who was born with spina bifida and hydrocephalus 25 years ago.

“When I was four months pregnant, I was given some yellow tablets. But when I took them, they would make me vomit, so I threw them away. Later on, I learned that the yellow tablets were iron and folic acid. Even if I had been aware of folic acid, I couldn’t have believed that those small tablets would have a great impact in the life of an unborn child,” notes Juliana.

After Phoebe’s birth and diagnosis, Juliana soon realized she was not alone; many families in Kenya and around the world faced the same struggle that her family did. “I wondered how many other families are out there struggling with their children and the lack of information,” says Juliana “I started the association to provide hope for families.” SHAK now has 1,024 members and trains families on strategies to help care for their children with birth defects.

Organizations like SHAK and the Food Fortification Initiative (FFI) are working to raise awareness to prevent birth defects. By partnering with the public sector, private sector, and civil society advocates like Juliana, FFI works to make the addition of vitamins and minerals such as folic acid to flour and rice standard milling practice worldwide.

Birth defects of the brain and spine are neural tube defects that include spina bifida, anencephaly, and encephalocele. These birth defects can take a serious toll on individuals’ quality of life, on families, and on health care systems.

Phoebe has had nine major surgical procedures. Once, she was put in a cast and had to stay in bed for six months. “To take care of her and turn her so she does not get bed sores [could be] a whole year of not working for me,” says Juliana.

“An estimated 61,677 birth defects of the brain and spine were prevented in 2020 in countries with mandatory programs in place to fortify wheat or maize flour with folic acid. That is an average of 169 healthier babies every day.”

Spina bifida occurs when a baby’s spine does not form correctly. Severe cases include paralysis and varying degrees of loss of bowel and bladder control. Children like Phoebe undergo a lifetime of surgeries and face many health issues. “For parents, we love our watches, not because they’re pretty, but because they remind us about the hour to empty our child’s bladder,” says Juliana.

Anencephaly occurs when the brain does not form properly. Affected pregnancies are often miscarried or babies born with anencephaly die shortly after birth. Encephalocele is a rare neural tube defect in which part of the brain protrudes through the skull.

Spina bifida, anencephaly, and encephalocele are birth defects of the spine and brain that occur in the first few weeks of pregnancy, often before a woman knows she is pregnant. These birth defects can be mostly prevented if women consume 400 micrograms of folic acid daily at least one month before they conceive and early in their pregnancies. Fortifying flour with folic acid is one highly effective way to reduce a country’s prevalence of these birth defects.

According to a 2020 study published using FFI data, an estimated 61,677 birth defects of the brain and spine were prevented in countries with mandatory programs in place to fortify wheat or maize flour with folic acid. That is an average of 169 healthier babies every day.

Unfortunately, the total only represents 22% of all birth defects that might be prevented with enough folic acid. Though short-term solutions like supplementation are valuable, mandatory fortification of staple foods with folic acid is critical to sustainably prevent future birth defects on a large scale. Fortifying food is a cost-effective strategy for increasing people’s folic acid intake with the potential to prevent up to 75% of most birth defects of the brain and spine. It does not require consumers to change their behavior; they simply continue eating foods they already enjoy.

This is why Juliana, Phoebe, SHAK, and FFI advocate for folic acid fortification so that children in Kenya and around the world can have a stronger future. “Supplementation will never be enough… I threw away my folic acid. How many other women will? How many women know how early they need folic acid? But if you fortify their foods, they will consume their foods, and they will get their folic acid.”