9.01.2012

aware // hydrocephalus

September is Hydrocephalus Awareness Month.  How appropriate since it's also A&R's birthday month.  This year's annual Hydrocephalus walk actually falls four days after their birthday.  Another interesting fact:  this year's March of Dimes walk fell on the anniversary of the weekend I found out I was pregnant.  Am I reaching?  Haha, maybe.  But I think it's a little eerie.

Okay, back to business.  Hydrocephalus.  According to
this source, one to two of every 1,000 babies are born with Hydrocephalus.   I once read somewhere that the stats are so vague because there is no national registry that records the births of babies with this condition.  My brain is shot, so I can't source that one for you.  Anyway, if you ask me, that's a lot of babies.  But, before my life was so directly affected by this condition, I really had no idea what it was.


On top of that, there are
hundreds of thousands of Americans who acquire Hydrocephalus, like A&R did, or from other brain trauma.  As a matter of fact, I was shocked to find out that one of the NICU nurses had this condition, and after having a shunt placed and months of therapy, she was able to return to work.  Cheryl was her name.  She gave me so much hope for my boys.  Bless her heart.


If you're wondering,
there is no cure for this life threatening condition.  There is treatment, in the form of a shunt.  But there is no cure.  And shunts are in no way perfect.  They malfunction and get infected.  And in many cases, they need to be revised within the first year.  A&R both already had revisions to their shunts, and they're not even a year old. 


And the kicker:  There has been
no significant improvement in the treatment and diagnosis of Hydrocephalus over the last 50 years.  This is a problem people.  We need to know more. 


I started a team for the boys, called Raiden, in hopes to do the Hydrocephalus walk this year.  But alas, life got in the way and we cannot be there.  Either way, I will be donating to the cause, and I hope that you can too.  Every dollar helps.  If you would like to donate, click through the Hydro button on the left.  And from the bottom of our hearts, thank you. 


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