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

Interview with Kenyan mother of young adult with spina bifida

Juliana Auma Okoth’s daughter Phoebe was born with spina bifida and hydrocephalus 22 years ago. Juliana later started the Spina Bifida and Hydrocephalus Association of Kenya.

On 24 July 2017, FFI’s Communications Coordinator interviewed Juliana during a regional training meeting held in Nairobi. Following is an edited version of their conversation.

FFI: Before you had Phoebe, were you aware of the recommendation to take folic acid to prevent birth defects like spina bifida?

Juliana: 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.

FFI: Phoebe was born with both spina bifida and hydrocephalus. Would you explain the difference?

Juliana: 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 of them can die.

FFI: How much medical care has Phoebe needed?

Juliana: At first, I went to the national hospital and was very hopeful. For a few months I had to go and come back, go and come back. 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 been treated at Bethany Kids Children’s Hospital in Kijabe as well.

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.

FFI: What kind of care does Phoebe need now?

Juliana: My daughter is 22 and has a catheter to empty her bladder. She has to set an alarm for 6 a.m. every day to empty her bladder. This will be a life-long condition.

Our children follow a regular program. They empty their bladders every three hours. 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. Phoebe uses a wheelchair for long distance and braces while in the house. It’s a different life, but once you accept it, life goes on.

FFI: Why did you start the Spina Bifida and Hydrocephalus Association of Kenya?

Juliana: I wondered how many other families are out there struggling with their children and the lack of information. I started the association to provide hope for families. Also to give parents a sense of belonging. And to show parents how to make money so they can take care of their children.

Normally in Africa, only the mother cares for a child. The association tries to train the entire family. We have the sister, we have the brother, we have the husband who can help the child.

FFI: Do you have any advice for people who are leading efforts to fortify food with folic acid?

Juliana: 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? Are you following them to be sure they are taking their folic acid? Our men also mistake the supplements for birth control pills, and they discourage us (the women) from taking them. 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.

FFI note: Spina bifida, anencephaly, and encephalocele are birth defects of the spine and brain that can be mostly prevented if women have 400 micrograms of folic acid daily at least one month before they conceive and in early in their pregnancies. Fortifying flour with folic acid reduces a country’s prevalence of these birth defects. See more…

Also see: Folic Acid: What every woman needs to know before becoming pregnant