What is Spina Bifida

What is Spina Bifida?

I have gotten used to that question when people find out that Landen has it. Usually that is the question I get from my "therapy friends". I'm used to explaining about the shunt, the AFO's, why he doesn't walk, the bladder issues, etc. Normally I don't mind a bit and most of the time I enjoy talking about it because it brings awareness to it and if I can educate just one person about SB, then I feel like I have done my job.
BUT... for the past several days, I have become irritated with some of the things I have heard and realized that not many people know ANYTHING about SB.(Or atleast the people that I've talked to the past couple of days)
The things that people have said just in the past few days..

1. Oh yeah, my niece "got" Spina Bifida when she was 12 yrs old. She's fine now though. (goodness gravy, really?)

2. Yeah I've heard that if you find out soon enough that you have SB all you have to do is take an antibiotic and it clears right up. (Ok, seriously)

3. I know someone that has SB and as soon as they took his shunt out, he learned how to walk and now has NO problems at all, it's like he never had it????? (Huh, good gosh people)

That's crazy right!!!

I wish more people would ASK "What exactly is that" when they hear the term Spina Bifida instead of just assuming or thinking they know what it is. I think that is why people end up aborting b/c they aren't educated enough about SB.

PLEASE ask me "why isn't your son walking" "why is he wearing those things on his legs", "why does he have a big scar and a bump on his head?" I welcome those questions!

And... it's so funny to hear how people say SPINA BIFIDA...

"Spinal Bifia" or "Spina Bifia" I don't even correct them anymore. =)

So, to those individuals that think you can "outgrow" SB or take an antibiotic to "clear it up", you are mistaken.

Spina Bifida means split spine. It is a congenital disorder caused by an incomplete closing of the embryonic neural tube which allows the spinal cord to protrude through the opening in the bones. 
Myelomeningocele is the most significant form and it is this that leads to disability in most affected individuals. (This is the type that Landen has.)

Children with spina bifida often have hydrocephalus, which consists of excessive accumulation of cerebrospinal fluid in the ventricles of the brain.^[15] Incontinence is also common. (Purpose of the shunt...to drain the excess fluid off the brain.)

Landen has several therapist and specialists which include the following.

Speech Therapist, Occupational Therapist, Physical Therapist, Neurosurgeon, Urologist, Ortho, allergist, ENT, GI and of course his regular Pediatrician. We certainly don't want to add any more specialist to our list.

What is Spina Bifida? It's not a dirty word in our house. It does not define who Landen is nor does it define who he will become or achieve in this life. It is not something that you can cure with an antibiotic! (haha..my favorite) Spina Bifida is what he was born with and we "roll with it". 

I love my special boy! He is perfect in every way possible and I can't imagine him any other way.