Spina Bifida affects more people than you would imagine, yet many are unaware of how prevalent it is, what contributes to it, and in what ways the Spina Bifida Association of Central Florida (SBACFL) is helping those with it live a more productive life.
Every day about 8 babies are born with Spina Bifida or a similar brain and spine birth defect also known as Neural tube defects (NTDs). In the United States, they are the most prevalent permanently disabling birth defect. Effects can range from mild (where the person may be unaware they have it) to severely debilitating. People with manifested (easily seen) Spina Bifida are in what is collectively known as spina bifida manifesta. Incidences of these more serious cases occur in one out of every 1,000 births.
As an older first-time mom, I worried about many things when I was pregnant, spina bifida being one. I read that the CDC recommends taking 400 µg of folic acid every day to reduce the chances of an NTD. I followed this (and many other health guidelines) and, thankfully, despite losing one twin during my pregnancy, delivered a healthy* baby boy**. All parents, however, are not given that same news and are, instead, faced with the challenge of coping with a child suffering from spina bifida. The good news is, associations like the one here in Central Florida have resources to help.
In addition to providing literature and a “welcome home” packet for parents to take home from the hospital, SBACFL provides continuing education with Illuminations: Resources for Parenting a Child with Spina Bifida Program (Illuminations). They also encourage patients with spina bifida through programs designed to foster independence.
The Spina Bifida Association of Central Florida works with both the state and national associations to provide camps and educational opportunities. Their goal is to help people with spina bifida, and their families, live their lives to the fullest.
There are a number of ways to get involved in helping SBACFL. One is by word of mouth: educating others about what spina bifida is through conversation, or blogging, tweeting, etc. You could also take advantage of one of their volunteer opportunities (email them for more information). There’s also a fundraiser coming up called “Walk n Roll!” How will you help the Spina Bifida Association of Central Florida (or the chapter in YOUR area)?
*Taking folic acid during pregnancy and eating healthy are but two ways to reduce (not completely avoid) NTDs and other birth defects. Maintaining a healthy weight is another.