Real Stories: Living with Spina Bifida - Nikia's Story

Nikia’s Story

Photo: Nikia
“One thing I’ve learned is don’t really put limits on yourself. Just because you have this condition, that doesn’t mean you have to limit yourself. You can work; you don’t want to hurt yourself, but you can work. There’s things you can do.”

Spina bifida is a birth defect of the spine, and people with this condition may have physical and intellectual challenges that affect major life activities such as education and employment. Some people with spina bifida may have limited feeling or paralysis in some parts of their bodies, making it difficult to walk. They may also have problems with bladder and bowel control. Complications from spina bifida can range from mild to severe, depending on the person.

This is Nikia’s story about the challenges and successes of a woman in her thirties living with spina bifida.

Successes of living with Spina Bifida

Nikia made a smooth transition from education to employment. She graduated from high school with honors, and made the Dean’s List during her senior year of college. Her state has a program for people with disabilities that provided her with the support of a vocational rehabilitation counselor from high school all the way through college. A vocational rehabilitation program is a federally funded, state program that helps people with disabilities get or keep a job. When Nikia graduated, the counselor helped her get her résumé into the right hands and she landed a job with a federal agency just weeks after graduating, right in the middle of an economic downturn.

“One thing I’ve learned is don’t really put limits on yourself. Just because you have this condition, that doesn’t mean you have to limit yourself. You can work; you don’t want to hurt yourself, but you can work. There’s things you can do.”

Challenges of living with Spina Bifida
Nikia with her infant son
“Don’t worry about who does not accept you just because you may have this birth defect. Be confident in who you are. You are special. Just know that to people who truly care about you and are your true friends, it doesn’t matter how you walk or if you’re in a wheelchair.”

Some people with spina bifida have a hard time with bowel and bladder control. Nikia says bladder issues are the most difficult aspect of having spina bifida for her. She says, “It’s almost like it controls your life, and I hate it. Some days, it’s like I can go to the bathroom and then five minutes later I’m going back. I just can’t help it. No matter where we go, the first thing I program in my mind is ‘find the bathroom.’ I can’t wait because I can’t hold it.” At work, Nikia manages this by having a desk that is as close to the restroom as possible. She also has the option to work from home when necessary.

Walking can be difficult for some people with spina bifida. The paralysis that comes with spina bifida means that some people with the condition have difficulty walking, and they may not be able to feel cuts and sores. Some people with spina bifida use braces, crutches, walkers, or wheelchairs. For Nikia, using braces led to another medical problem: they irritate her sensitive skin. She says, “The braces rub too much. I’m actually recovering from a sore from the braces I was using. It’s scary because I didn’t notice it at first. I don’t have a lot of feeling down there. My foot started swelling and I was like what’s going on and I happened to look down and yeah, it kind of rubbed a lot.” She says that some days she uses her son’s stroller for walking support, or if she has a day with a lot of walking, she will ask someone to push her in a wheelchair. Nikia stays active going to her son’s T-ball and basketball practices and to church activities.

Nikia remembers being young and sometimes coming home from school crying, looking to her mom for support. She says, “My biggest challenge at that age was learning to accept my condition.” She says that if she was talking to a teenager today who is living with spina bifida she would say, “Don’t worry about who does not accept you just because you may have this birth defect. Be confident in who you are. You are special. Just know that to people who truly care about you and are your true friends, it doesn’t matter how you walk or if you’re in a wheelchair.”

What is Spina Bifida?

Spina bifida occurs when a portion of the backbone, as well as the spinal cord beneath, do not form correctly during pregnancy. This typically results in damage to the spinal cord and nerves. Healthcare professionals usually are able to identify spina bifida before a mother gives birth. Each year about 1,427 babies are born with spina bifida in the United States.1

What CDC Is Doing

Bladder and kidney health are important for everyone, but especially for people with spina bifida. They are at risk for developing kidney failure at a younger age than people without spina bifida. Regular monitoring and testing can identify kidney disease early, which may keep it from getting worse.

New research from the National Spina Bifida Patient Registry suggests that children with spina bifida may not be receiving the tests they need to monitor the health of their kidneys. The study found differences in how often patients at spina bifida clinics received tests to monitor their kidney health, and which tests were performed. Read a summary of this scientific article on kidney function surveillance [link to PubMed abstract].

CDC works to protect the kidneys of babies born with spina bifida, and reduces the need for surgery through the Urologic Management to Preserve Initial Renal Function (UMPIRE) Protocol for Young Children with Spina Bifida.

More Information
Reference

Mai CT, Isenburg JL, Canfield MA, et al. National Population-Based Estimates for Major Birth Defects, 2010-2014. Birth Defects Research. 2019 Nov 1;111(18):1420-1435