Spina Bifida and media misrepresention

After reading the following article, I was a bit perturbed by their misrepresentation of the “facts” surrounding Spina Bifida. The more I think about it, I’m livid! In this day and age it is absolutely disheartening to know that physicians are still giving the Gloom and Doom (AND incorrect) prognosis as they did when I was born 50 years ago. Then! Then to have these inaccuracies further perpetrated by articles like this? *Breathe* Before I go further, here’s the article I’m referring to (and please forgive my grammar, I’m writing from the heart and not really worried about structure): 


Quotes directly from the article: 

“Babies with spina bifida are paralyzed from the neck down. The back vertebrae overlying the spinal cord do not fully form. As a result, a section of the spinal cord protrudes through.

Hydrocephalus is a condition in which a large amount of water accumulates in the brain, causing a host of complications, even death in severe cases.”

First of all, no case of Spina Bifida is exactly alike. The majority of us ARE NOT paralyzed from the neck down. There are varying degrees, mostly involving lower extremities, and even in those cases (such as mine), the paralysis incomplete, meaning I have some feeling in parts of my legs, decreased to no sensation in other parts.

Hydrocephalus is NOT a large accumulation of water in the brain, it is an abnormal buildup of cerebrospinal fluid (CSF) in the ventricles of the brain, which in most cases, is easily fixed by the placement of a shunt.

Some of us walk, either unaided or with the assistance of leg braces and/or crutches. Some of us use wheelchairs (part time or full time) to be mobile.

We generally have the same life expectancy as the rest of the population. We go to school, work, get married if we choose, have kids, do every day “stuff”. We laugh, we cry, we feel just like everyone else.

To portray living with Spina Bifida in such a negative light is to further push the stereotypical attitudes that the majority of us are trying so damn hard to fight. So, please do yourself a favor. Do your research, ask people who actually LIVE with this and not rely on that kind of reporting. 

Thanks for letting me get this off my chest. Peace

One thought on “Spina Bifida and media misrepresention

  1. Thank you for writing this, for venting for showing your heart. Like so many other things we don’t understand, it is easy to accept the misinformation as ‘fact’ and fail to ask the questions. It is easy to be embarassed and not ask. It is easy to look away and not ask. We should instead, as you say ask. You remind all of us, it is better to get over ourselves and not only ask but reach out and be inclusive in our friendships.

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