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Saturday, September 5, 2015

Living with Hydrocephalus and Praying for a Cure

September is national hydrocephalus month, a condition I have lived with most of my life.  In simple terms, hydrocephalus is an excessive build up of fluid on the brain.  If left untreated, it can lead to brain damage, physical disabilities, and eventual death.  I am very open about my story, though few have the patience to sit through all of it.  Living with hydrocephalus is not a one story victory, but a life long journey of wins and losses; of hope and discouragement.  I truly believe that for the family who loves the one living with hydrocephalus, the journey is harder on them.  You see, every time I was in pain, my body and brain let me forget.  But my father, my mother, my sister, and my husband had to see me fall into a dark place, listen to my screams of pain, and be completely helpless to help me.  All I remember is having a headache, throwing up, and then waking up to Jello, ice cream, and gifts everywhere.  When I share my story, I usually get some kind of response like, "I'm so sorry this happened to you", or "I'm sad you have had to live through this".  The truth is, though I've lived with this condition since early childhood, I am extremely lucky.  I have wonderful, encouraging, loving parents who both always sought the best for me, and expected my best from me.  I have a older sister who loved and watched over me as if I was her own child.  I have an LARGE extended family that always loved me and prayed for me.  And God gave me a husband that loves me for who I am, and fights for me in so many ways.  So the way I look at it, I am so blessed, that something in my life needed to be difficult.  I love sharing my story because it shows how God is at work in the details of our life, how prayer does not go unanswered, and hopefully provides comfort to those affected by hydrocephalus. My story begins with when I was about 6 months old.

 At my six month checkup my pediatrician asked my mother a seemingly harmless question, "Do large heads run in your family?", to which she answered "Do you mean figuratively or literally?".  Little did she know, this question would lead down unknown path of hydrocephalus for her second child, me.  A month or so later, I was being scheduled for an experimental shunt surgery.  So my parents watched as their baby was put under anesthesia, and reeled into an operating room for her first brain surgery.  But after the surgery, my mother knew something was wrong, even though the surgeon and doctor assured her everything was ok.  But my mother fought, and sought another opinion.  There, her fears were confirmed, and her baby was sent off again for a second surgery to replace and relocate the shunt.  To help better understand the fear my parents were feeling, I think its important to understand what is involved with a shunt surgery.  Basically, the surgeon drills a dime size hole in the patient's skull, which allows the surgeon to pass the shunt through the brain.  The rest of the shunts tubing is passed just under the skin of the patient to the stomach area where the excess fluid can be absorbed.  So my parents where understandably scared.  Now their daughter, less than a year old, had two holes in her skull, an incision in the middle of her tiny body, and some kind of pipe running through her body.  Fortunately, this shunt lasted 7 years. 

A precious picture of my grandma and me after my first surgery. 
My head is a little enlarged from the pressure of the fluid.
During the seven years, I lived a very normal life.  I never crawled, but instead started walking at 9 months.  I started dancing ballet at two, followed by tap and jazz.  I went on camping trips with Indian Princesses with my dad and sister.  I had best friends, first sleepovers, learned to ride a bike, and basically lived a normal life.  The one thing I was not allowed to do was play sports.  But since I wanted to be just like my big sister, who wasn't a fan of sports, that was not a big deal for me. My parents treated me just like my older sister, with no special considerations made just for me.  I was expected to do my chores, do well in school, and try my hardest at everything I did.  When I was seven years old, we moved to Calgary, where my shunt almost immediately failed.

Within a month of moving to Calgary, my shunt failed.  So my parents found themselves in a new country with no support system, in a medical system they did not understand.  As my dad recalls, my shunts always seemed to fail on a Friday night or Saturday, when neurosurgeons where out of the hospitals until the following Monday.  My dad then recalls having to listen to me for 2 whole days, screaming in pain as the fluid pressure built up on my brain.  Once he was fed up with listening to his child in such pain, he would find the closest nurse and insist they do something.  A few minutes later, a nurse would come into the room, stick an enormous needle into my head, and draw the fluid from my head.  This would go on through out the weekend.  I can't even imagine how difficult this was for my parents.  My brain, thankfully, does not allow me to remember any of it.  When Monday finally came, I had a shunt revision.  Coming out of the surgery, the neurosurgeon told my parents that he had not looked at my file before going into surgery, and that I would likely be needing a new surgery soon.  He was right.  About a week later, I was back in the ER.  The neurosurgeon on call this time actually looked at my file, and relocated the shunt.  This shunt lasted two years, during which my life progressed as normal.  I started school donning a scarf around my head that matched my outfit.  My mother made various scarves in every color imaginable, and even made dresses and scarves from the same material.  This is one of those details of life that helped me not feel different due to my hydrocephalus.  I was just a girl with a mother to made her accessories to match her outfit, like a matching hair bow.  There is one thing that all families affected by hydrocephalus can relate to, and almost laugh about.  The symptoms for a shunt malfunction and the flu are pretty much the same.  You are lethargic and throw up everything you eat.  When most parents' children have these symptoms, they check for a fever and then worry if there is one.  Parents of a hydrocephalic child take their child's temperature, and then give a sigh of relief if there is a fever.  This means their child "only" has the flu or some other virus.  If there is no fever, then they rush off to the emergency room, fearing a shunt malfunction.

A picture of me looking so happy after my last surgery in Calgary, eating something liquid.
My life continued as any other child's for the next couple of years.  I continued dancing, and was even accepted to dance in the annual Calgary Stampede.  Then, in the first week of July, when I was to perform with my dance troop, my shunt failed.  Another emergency shunt revision with my third neurosurgeon in Canada.  This neurosurgeon came out of the surgery saying the exact same thing as the first one "If I had looked at her file before going into surgery, I would have done the surgery completely different.  Her shunt will probably fail within the week".  And it did.  A week later, I was back in the emergency room.  This time, I was fortunate enough to have the same surgeon as the second surgery, and this time enough tubing was put in me to allow for growth to adulthood.  The shunt was also relocated.  This surgery also came with a new, horizontal scare on my left side, and another hole and incision scare on my head.  This shunt lasted 20 years. 




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