October is spina bifida awareness month

Every October the color Pink becomes more popular. From NFL players sporting it to pink windshield wipers available at your local service center, the campaign for Breast Cancer Awareness is widely publicized. Let's face it, saving the tata's is a popular cause.

However, a much lesser known cause also shares this month. October is spina bifida awareness month.

Even I, a mother of a five year old with spina bifida, did not realize this until recently. But now I will take this opportunity to spread the news, and also share that pale yellow is the official color for spina bifida awareness.

Another spina bifida mother wrote the following article that provides a great summary of what spina bifida is and how people are impacted by it.

Column by Pam Rasmussen: October is spina bifida awareness month: October is spina bifida awareness month. Although most of you probably don’t know a lot about the birth defect, it is the most common permanently disabling birth defect in the Unites States.

A couple months ago, I also wrote a more detailed article about what spina bifida looks like and how it happens. You can read here, What exactly is Spina Bifida?

The most important awareness to spread about spina bifida is how to prevent it. It's not a guarantee, but the one factor that studies can prove reduces the likelihood of spina bifida occurring in pregnancy is Folic Acid. Women of child-bearing age should take a daily vitamin with at least 400 mcg of folic acid, more if possible.

Children and adults with spina bifida often lead active and fulfilling lives, but there are many ways that this birth defect impacts them. Following is a quick summary:

• Paralysis/Lack of sensitivity in legs
• Fluid on the Brain often requires shunt
• Limited or total lack of bladder and bowel control
• Regular catheterization and bowel management programs
• Frequent UTIs (urinary tract infections)
• Obesity and weight challenges due to limited activity
• Shorter stature as a result of weakened leg muscles that limit growth
• Educational and learning delays, often related to complications with the shunt
• Club feet or smaller than average feet
• Strong upper body strength that compensates for paralysis in legs
• Mobility possible with assistive devices such as leg braces, crutches, wheelchairs, etc.
• Social difficulties as growing children adjust to being "different"
• Depression due to the daily challenges they face
• Multiple medications taken throughout the day and regular doctor visits
• Regular surgeries related to shunt, bladder or legs
• Large scar on the back from where the spina bifida lesion was located at birth

This photo shows Adria's spina bifida scar just over a month after she was born.
Photo credit Ruth Kauffman.

As a mother, my goal is that our daughter learn as much as she can about herself and not be defined by spina bifida, but adapt to its impact on her life and pursue her strengths!