Spina Bifida Awareness Month: A Mother’s Perspective

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If you have young children, you may already be a bit familiar with spina bifida without even realizing it. The character Chrissie from Daniel Tiger’s Neighborhood has it. I love how the show incorporates her disability without allowing it to be what defines her character.

In that respect, Chrissie and my son actually have quite a bit in common. I am the mother of a vibrant 5 year old who loves superheroes, arts and crafts, traveling, his pets, and playing with his friends at school. He also just so happens to have spina bifida. Though our family chooses not to let spina bifida rule our lives, it does play a part in every single one of our days.

It’s sometimes hard for me to believe that just six years ago I didn’t know much at all about the most common neural tube defect. However, now that my son is one of the estimated 166,000 individuals in the United States living with spina bifida, I feel compelled to help spread awareness. So today, the very first day of Spina Bifida Awareness Month, I want to tell you what spina bifida is…and what it isn’t. 

What Spina Bifida Is:

  • Spina bifida literally means “split spine”.  It happens in the womb when the spinal column doesn’t completely close.
  • Spina bifida can (but not necessarily will) cause: weakness or paralysis of the lower extremities, a lack of sensation in the skin of the lower extremities, a build up of cerebral spinal fluid (which could lead to hydrocephalus), and bladder and bowel challenges. 
  • Spina bifida is repaired by using either a traditional postnatal or a more recently discovered prenatal method. For a great overview of what prenatal surgery is, check out my friend Erin’s post over at The Memphis Moms Blog. Spoiler Alert: Neither method of surgery is a cure for spina bifida.
  • Spina bifida is a snowflake condition. No two people who have it are affected the exact same way. Some use a wheelchair as a primary means of transportation, and some don’t. Some walk independently (or with bracing), and some don’t. Some need a shunt to manage hydrocephalus, and some don’t. There are no guarantees when it comes to spina bifida, but one common factor in those affected by it is that they are nothing short of amazing.

What Spina Bifida Isn’t:

  • Spina bifida is NOT a mother’s fault. Yes, it can occur due to lack of folic acid, but most all the mothers of children with spina bifida who I know personally took their prenatal vitamins. Genetic and environmental factors are also thought to play a factor in causing spina bifida. 
  • Spina bifida is NOT a death sentence or even a promise for a “low quality of life”. Modern medicine is amazing, and those living with spina bifida today are even more so.
  • Spina bifida isn’t what defines the person it affects. There is so much more to a person with spina bifida than his or her diagnosis. 

My friend (and a fellow mother of a sweetie living with spina bifida), Melanie said it best, “in the end, we are all the same inside…same thoughts, feelings, hopes, dreams, souls…physical disability and medical issues don’t change that.” And at the end of the day, that’s what I’d like anyone reading this to remember. Spina bifida truly isn’t what defines the person who is living with it. 

If you don’t believe me, check out the personality filled faces of kids from our city who are personally affected by this condition. I guarantee you the first thing you see it not their diagnosis. Instead, you will see beautiful children who have overcome more obstacles in their young lives than many of us will face in our lifetimes. You will see joy, pride, and love. You will see young people who, though faced with adversity from the time they were born, are living life to the fullest.