Alia

Hi, my name is Alia. I am 20 years old, and I am a hydro warrior. I was born at 28 weeks with hydrocephalus due to a brain bleed. When I was about 4 weeks old, I had my first shunt placed.  My story is very long and complicated, but my faith in God and the miracles he has worked in my life have gotten me through the tough times.  I don’t even know where to begin, but let’s just start from the beginning. 

 For the first three years of my life, I was being treated in Spokane, Washington, but it got to the point where my situation was so complex that my care had to be transferred from Spokane to Seattle because they didn’t have the right technology in Spokane. 

Leading up to my operation in Seattle, I was suffering from severe symptoms. I was experiencing intense headaches that affected my behavior, along with vomiting spells, and often I had to lay down on chairs to cope. A few weeks later, I was taken to Seattle and was admitted to the intensive care unit (ICU). On June 26th, the neurosurgeons performed surgery to try and fenestrate the 10 cm cyst on my brain stem, but they were not successful. A few months later, they tried again and that time the operation was a success. 

In the years that followed, I would have several more shunt revisions, many of which were to insert longer tubing as I grew.  For each of these surgeries, the doctor would externalize the tubing to test for infection before replacing it.  Every time there was an infection, the tubing would have to be externalized for three weeks for testing until the infection cleared – and then I would need another surgery to internalize the shunt again. This was like a vicious cycle and was my life for 6 years or so.

My last shunt revision was in 2015. What started as a routine procedure to have the tubing lengthened again resulted in 5 surgeries over the span of about 2.5 months.  But praise God that was the end of it, and I haven’t needed another surgery since! 

Life with hydrocephalus has taught me a lot. Yes, it sucks sometimes. But it’s taught me that God has worked miracles in my life, and that everything happens for a reason. Everything that I’ve gone through in the past has brought me to where I am now and has molded me into the person that I am today. Yes, I wish it was a smoother ride, but it’s taught me that nothing is ever easy and that in order to overcome the different obstacles that we face in life, it takes a lot of faith, trust, but most importantly, determination in never giving up. It can be hard sometimes, and there were days when I wanted to give up too, but I knew that there would be light at the end of the tunnel. I just had to keep going until I found it.

I am thankful for all of the people who have helped me to be the person I am today. To my neurosurgery team, words cannot begin to express my deepest gratitude for all that you guys have done for me over the years that have helped bring me to where I am today. To my grandma and grandpa, who have stood beside me through every surgery, hospital stay, ambulance, or helicopter ride. The ones who were always by my side when I would be repeatedly poked with needles to get an IV started. I know I probably don’t say it enough, but I hope you know that I love you more than words can express. I wouldn’t be here without you, and I hope you know that I’m forever grateful and that I love you both more than you can imagine.

To my amazing family and friends who prayed for me through all of this…. Your prayers have meant the world to my family and I as I was going through all that. What it all shows is that God hears our prayers — and more importantly, he answers them — because almost every time, I came out of surgery without any major complications. It’s been a long journey, but we just have to keep hoping and praying that things continue to go well — and that this long stretch without surgeries continues. 

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