Tuesday, October 8, 2013

Spina Bifida Awareness

Did you know that?  Most people don't as it is often overshadowed by Breast Cancer Awareness.  While I mean no disrespect to breast cancer sufferers or survivors, I think something should be done about this.  If you walk the streets and ask 10 people what breast cancer is, chances are pretty high that they know.  Ask the same 10 people what spina bifida is and you're likely to get a few blank stares.  Forgive the dumb down, but awareness is supposed to make people aware.  People KNOW about breast cancer.  They don't know about spina bifida... at least not enough of them.

Studies show that over 60% of babies diagnosed in the womb with spina bifida are aborted.  But if they knew that their child had a better chance at living a normal life ... would they still?

When Dryden was diagnosed, we had never really heard of spina bifida.  We most certainly didn't know enough to make any sense of the situation.  The picture we were painted, as most parents are, was that of a "vegetable".  A child who would never talk, never walk, and would be a burden on us and society.  What we got was something totally different.  And as we have found over the last year... it has been the same story with almost everyone we have spoken to.

I'm hoping to change that.  To let parents know that there is so much hope out there.  Here is some info that we hope you will share.

There are four main forms of spina bifida.  This photo only shows three... but there is one that is not listed.  It is called rachischisis.  This form is most probably not listed because it is almost 100% fatal.  That being said... we know one absolutely adorable little boy (Elijah James) with rachischisis that is almost 3 years old!

Dryden was born with the most common form of spina bifida, myelomeningocele.  In this case, part of the spinal cord and surrounding nerves push through the open vertebrae in the spine and protrude from the back.  These nerves and exposed spinal cord are typically (as in Dryden's case) enclosed in a sac.  This requires immediate surgical repair to close the back and repair the spine.

Depending on the location of the lesion, it may cause bladder and bowel problems, sexual dysfunction, weakness and loss of sensation below the defect, orthopedic malformations such as club feet or problems with the knees or hips and the inability to move the lower legs.  The higher the defect is located on the spine, the more severe the complications.

Another common problem associated with spina bifida is Chiari II malformation.  Chiari II is where the brain descends into the upper portion of the spinal canal in the neck.  This blocks the circulation of the cerebrospinal fluid and causes Hydrocephalus.  Hydrocephalus is an accululation of the fluid in the brain.  This can injure a fetus' developing brain.

Modern medicine has come so far in helping people with spina bifida live happy, normal lives.  There is now an option of fetal surgery.  In this surgery, the fetus is partially delivered, the spine is repaired, and the fetus is returned to the womb.  The benefits of this surgery include:

  • Reversal of the hindbrain herniation component of the Chiari II malformation
  • Reduced need for ventricular shunting (a procedure in which a thin tube is introduced into the brain’s ventricles to drain fluid and relieve hydrocephalus)
  • Reduced incidence or severity of potentially devastating neurologic effects caused by the spine’s exposure to amniotic fluid, such as impaired motor function
Now for Dryden's story.  

Dryden had his spine repaired at less than 24 hours old.  He had a shunt placed 2 days later to regulate the fluid in his brain.  He has since had 3 additional surgeries.  Though the spine was placed back inside the body and the sac closed, the nerve damage cannot be repaired.  He has no sensation from his knees down to his toes.  He also has no movement in those areas.   Dryden has very little to no control over his bowel/bladder.  He sometimes needs to be catheterized in order to keep his kidneys safe.  He also has hip dysplasia due to the lack of muscle control in this area.   

But that's not all of Dryden's story.  He is a superhero.  

Dryden loves being outside.  He loves cruising around in his little chair.  He has the silliest personality ever.  He adores his big sissy.  He is his daddy's best friend.  He is mommy's little fighter.  

Though he only says a few words - dada, bubba, yaya (mama) - he can sign a lot more.  He signs daddy, fish, bike, dog, touchdown, more ... and I'm sure there are some that I've missed.  Needless to say... he is SMART.  He has no real cognitive delays... he is above average in his social skills.  He is the perfect little boy we hoped for.  He just happens to have spina bifida.  

Having a child with spina bifida is never easy.  There are days when I can't handle it and breakdown.  But I have found that it's just me.  To him... it's all normal.  This is his life.  There are surgeries.  There are diagnosis... but there are no limits.  

We have met some of the most amazing people on this journey.  People who have proven that having a diagnosis is not having a disability, but rather a possibility.  Dryden doesn't know that he is any different than any other child.  He does what he can and he tries his best to push himself as far as he can.  

I ask you... please share this blog.  It isn't about us.  It isn't about Dryden.  It's about educating people.
A diagnosis of spina bifida is not the end.  Don't let a diagnosis be a death sentence.  Let's make spina bifida KNOWN.  Make people aware.  Make October pink AND yellow.  Make sure your neighbors know. Make sure your siblings know.  Let your kids know.  Let EVERYONE know what spina bifida is.  The more you know, the better.  

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