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Wednesday, September 30, 2015

Prayers Answered and A Cure for My Hydrocephalus

For the next twenty years my life continued as normal.  I lived a seemingly normal life, singing in my church, learning to play the piano, clarinet, and hand bells.  I had sleepovers, ballet classes, and learned to wear makeup.  I was even given the chance to perform again in the annual Calgary Stampede, which I had missed two years early because of my surgeries.  My family moved back to the states where I started the seventh grade.  My life was very normal.  I experienced normal pre-teen/teenage struggles of not fitting in, finding my place in school, and making new friends.  I had first crushes, a first love, and first heartbreak.  I went to my first dance, joined marching band, and became the captain of the colorguard. I loved to perform and landed the lead role in my school's performance of "Joseph and the Amazing Technicolor Dreamcoat".  For the most part, I kept my condition hidden and secret out of fear.  Fear of being further ostracized, fear of others not understanding, and fear of ridicule.  I never wore a two piece swim suit so my scars were never revealed, and styled my hair so my bald spots were hidden.  I opened up to only a very few about my condition.  Some, like my best friend in middle school, understood my insecurities and the severity of my condition.  Others did not.  But God surrounded me with people to who loved me, and so though others misunderstandings hurt, it did not greatly affect me.  Life went on, I graduated from high school, and moved on to college.

When I started college, it had been almost 10 years since my last surgery, which seemed a lifetime ago.  I made new friends, lived in an apartment with my sister, and got involved with clubs.  That's when I met my now husband.  We began hanging out on our common love to dance.  I opened up to him about having hydrocephalus.  He did his own research, and asked me many questions.  To some this may have been annoying, but I really appreciated his genuine interest in my condition.  He didn't just take what I had told him about my story, but also looked into the condition as a whole.   Our friendship grew, and a year later decided to officially start dating.  I continued through college, finishing my degree in Mechanical Engineering from a top Engineering school.  I then took my first job, which sent me to Delaware.  My father, years later, admitted to me this was a very difficult for him.  He did not like being so far from me, not knowing if I was ok, and knowing that no one knew of my condition up there.  I really never worried about it.  It seemed like a part of my past, something that no longer affected me.  But it was always there.  Something I did need to be aware of. 

About a year after graduation, my boyfriend proposed.  I knew then I could no longer ignore the condition I had.  There was still so much I didn't know about my condition that would affect this man's life.  I tried to look into information of women who had had children and were hydrocephalic.  I found nothing.  I was not sure if I could have children.  So, about a year after our engagement, I had to let him know I was unsure if I could give him his own kids.  That, if he stayed with me, there was no guarantee he would have his own children.  I was heartbroken knowing what his answer could be.  Knowing, that for some men, adoption was not a choice.  But this was not his response.  He told he didn't care whether or not I could get pregnant.  What he wanted was a life with me.  He said if we decided we wanted children, then we would adopt.  He reassured me.  We were married a year later. 

About two years after we were married, we found out I was pregnant!  God started to move.  We were living in a very small town at the time, and my doctor had never had a patient with hydrocephalus.  I visited my neurologist, and he said he was not concerned.  A month after we found out I was pregnant, my husband lost his job.  So there I was, pregnant, uncertain what was going to happen, working 10-12 hour shifts, and the sole provider for our family.  I was scared, but little did I know this was God's plan. A month later my husband had found a new job, but in a bigger city.  I continued to work, with my husband over an hour drive away from me.  At about 10 months pregnant, I had an episode.  I don't remember much about the episode or anything that happened the entire weekend.  I know my mother gave me a baby shower, at some point I blacked out, began spotting, and had severe headaches and nausea.  They took an MRI, but everything looked normal.  A couple of days later I went to an eye doctor who discovered I had lost my peripheral site.  My doctors were not sure what was going on, but thought the additional fluid in my body from the pregnancy was causing extra pressure within in my body, causing the loss of site and headaches.  They put me on restrictive driving, and sent me home with headache and anti-nausea medicine.

On my actual due date I went into labor in the middle of the night, and after 24 hours of labor and an emergency C-section, I had the baby I was never sure I could have.  My baby had gotten stuck, meconium was released, his heart rate started to lower, so they had to get him out quick.  My obstetrician was not sure what to do with the pipe that popped out during the C-section, so he just stuck it back in.  A week after my son was born, my shunt failed.  At this point, I lose two weeks of my life.

This time my symptoms looked nothing like they had in the past.  My husband said he realized something wasn't right in the middle of the night.  He found me in the living room.  I said I was waiting to let the dogs inside.  They had been at my parents' house for the past two weeks.  I did not remember giving birth to our son.   He quickly rushed me to the nearest hospital, where they refused to admit me.  They told my husband that I had post-partum depression, and he should just take me home.  It would pass.  This is where I know God chose THIS man for me.  He refused.  He told the nurses they did not know what they were talking about, and he would not leave.  So we sat in the ER.  He called my mother, and when she arrived they tag teamed between taking care of a newborn baby and insisting that I be admitted.  The nurses continued to say "She's just a post-partum depressant.  Just like Brooke Shields".  Well, if the nurses were wanting to enrage both my husband and my mother, this was exactly what they needed to say.  They didn't care about Brooke Shields.  They cared about me.  When morning arrived, my husband called my neurologist.  He tried to tell my husband to just schedule an appointment.  My husband said NO, you're coming down now.  My husband also called my obstetrician.  He was the only doctor who seemed to see the urgency in the situation.  I was a neurological patient, not a post-partum depressant.  While we waited for them to finally admit me, God took the reins again.  A neurosurgeon just happen to walk by me and my husband.  He sensed something was wrong with me, and asked me to look up with my eyes.  When I couldn't, the neurosurgeon looked at my husband straight in the eye, threw papers at him, and said "Here is the paper work to admit her.  Sign it, or don't, but I'm getting her into an OR.". Finally!  He relieved the fluid off my brain, and put an emergency external shunt on my brain to regulate the fluid.  He told my husband that as long as the pressure stayed below a certain number, I was doing ok.  My husband later recalled to me he would listen to the sound of the machine increasing in pressure, and praying for the pressure to go down.  I remember none of this.  While my husband and mother fought for my life, God was moving again.  My dad was contacting an old friend from 30 years ago.  He was a doctor who had suffered the loss of a child around my age 30 years ago, and my father had carried the child's casket.  My father now turned to his friend for his child, me.  He asked if there was anywhere I could be transferred to.  His friend said that his son-in-law was completing his internship at UT Southwestern, and would see if he could get me admitted.  A few hours later, my husband and I were in ambulance to UT Southwestern, one of the top neurological hospitals in the nation. 

Upon my arrival, the ER doctors looked at me, and informed my husband that if he had listened to the ER nurses at other hospital and taken me home, I would have passed away within 4 hours.  They rushed me to the ICU, where they discovered that during my wait, my C-section incision had become infected.  They could not perform a shunt revision on me until all the bacteria from the infection was cleared out of my body.  So for about two weeks, I lay in the ICU with the external shunt regulating the fluid in my brain.  My husband spent every day with me, only leaving at night because visitors where not allowed at night. While waiting for my incision to heal, the doctors looked further into my history.  They asked my parents very pointed questions about my history.  They took new MRIs.  During this time, they were able to discover the cause of my hydrocephalus: a blockage in the third ventrical in my brain.  They informed my husband of the new procedure and the additional risk associated with it.  Instead of giving into fear, and going with the procedure that was familiar (shunt revision), he remembered a conversation him and I had had years earlier.  One where I told him if there was ever a way I could possibly be healed that I would want to try it.  So he told them to proceed with the new procedure, an ETV (Endoscopic third ventriculostomy).  This procedure involves drilling a hole in the third ventricle of my brain using an endoscope, or as my neurosurgeon put it "I basically roto-routered your head".  After the surgery I was not recovering well.  My husband, family, and the nurses all feared the worse.  One day, one of the wonderful nurses asked my husband if they could bring my new born son in to see me.  After spending a short time with my baby, I started to improve.  Within less than a week I was moved from the ICU to a regular room, and shortly discharged.  I was no longer shunt dependent, and within 6 months my neurosurgeon completely released me from his care.  Two months later, I started a new job as an Engineer.  God's healing is truly amazing!
Though my story of my healing is amazing, what I hope you learn from my story is how awesome God is.  For 30 years my parents prayed for a cure for me, and He delivered.  God had me deliver my first child in a place that was unfamiliar with my condition, which lead to my shunt failing.  God used the challenging childhoods of my dad, mother, and husband to create extremely strong fighters who would not accept what "the professionals" were telling them.  God knew I would not survive the ETV surgery without a reason to fight for life, so he gave me my son as my reason to live.  He nourished a life long bond between my parents and a couple 30 years ago so that they would be the way He used to get me to UT Southwestern.  He allowed my C-section  incision to be infected so the doctors would have more time to investigate my condition.  God knew the importance of nursing to me, so He placed nurses on every shift at UT Southwestern that were willing to express my milk every three hours so I could continue to nurse my son once I was released. He healed my body so I could return to working as an Engineer only a few months after having two major brain surgeries.  My story is not one of all the difficult things I and my family endured because of hydrocephalus, but is a story of a glorious God that answers prayer in His timing. 


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.