Food Fortification Initiative Helps Protect Children from Birth Defects

Juliana Auma Okoth’s daughter Phoebe was born with spina bifida and hydrocephalus 22 years ago in Kenya. At that time Kenya was not fortifying its flour with folic acid. Juliana started the Spina Bifida and Hydrocephalus Association of Kenya. Kenya now fortifies wheat and maize flour with eight nutrients, including folic acid. Below is an excerpt from Juliana’s July 2017 conversation with the Food Fortification Initiative. The conversation is especially timely since September is Whole Grains Month.

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.

Phoebe was born with both spina bifida and hydrocephalus. “Spina” stands for spinal cord, and “bifida” is the opening. With spina bifida, the spinal cord does not close normally, and so there’s a hole. It can cause paralysis of the lower limbs. Most children (with spina bifida) are not able to control their bladder and bowel function.

Some develop hydrocephalus as a complication of spina bifida. Every person’s head produces water. This water is called cerebrospinal fluid. The head is supposed to absorb this water naturally. For children with hydrocephalus, their production of this fluid is higher than absorption, and they must have shunts (medical devices installed surgically to drain the fluid). Untreated hydrocephalus can cause brain damage, blindness, and some children can die.

For Phoebe’s medical care, at first I went to the national hospital and was very hopeful. When I met the neurosurgeon who could treat Phoebe, I was told they could treat my child for free, but we would have to wait for two years because the list was so long. As you wait, your child’s condition worsens.

I gathered courage and went to one of the newspapers and appealed for help, and that is how I was able to get in a private hospital in Nairobi. 

Phoebe has had nine major surgical procedures. One time, 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 is sometimes a whole year of not working for me.

My daughter is now 22 and has a catheter to empty her bladder. She has to set an alarm for 6 a.m. every day to do this. This will be a life-long condition. She uses a wheelchair for long distance and braces while in the house.

I wondered how many other families were struggling, so I started the Spina Bifida and Hydrocephalus Association of Kenya to provide hope for families and to give parents a sense of belonging. We also show parents how to make money so they can take care of their children.

Supplementation will never be enough. Remember that 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. Work with the parents. We have the evidence. We have the experience. Let us help you make that noise about fortification. 

Learn more: The Food Fortification Initiative is a public, private and civic partnership to promote the use of foods fortified with essential vitamins and minerals around the world. To invest in CDC’s efforts to protect women and children, or to learn more, visit Food Fortification Initiative or contact Advancement at the CDC Foundation, advancement@cdcfoundation.org, 404.653.0790.