I have felt that over the years hospitals have become my “home away from home.” My life started in the operating room at Stony Brook Hospital, and I spent the first year of my life in the Pediatric Intensive Care Unit. CT scans, IVs, and surgeries marked the beginning of my life.
Just when my parents thought they were to give birth to a baby girl, their whole world came crumbling down. When I was only three and a half weeks old, I was diagnosed with bacterial meningitis. My parents were distraught, especially when the doctor told them I was not going to make it. Tears rolled down my dad’s face as he held me. My aunt Angela was there through thick and thin giving my family the best support. As she saw my dad crying, she said , “Don’t worry she’s going to be okay. You will be walking her down the aisle for her wedding.”
I was hospitalized for months at a time having many antibiotic treatments to treat this deadly disease. The doctors informed my parents that I most likely would have permanent damage, such as being blind or deaf, and may not be able to lead a normal life. I am not blind or deaf, but meningitis led me to develop hydrocephalus.
After I was discharged from the hospital, my parents looked at my head and I had a huge lump on the back of my head. So, I had emergency surgery done to have my first shunt placed. I ended up having 10 brain surgeries before the age of 1! But by the time I turned 2, I was surgery free for over a decade.
That all changed when I turned 13 and began experiencing awful headaches, neck pain, and no appetite. I had doctor visits day after day, but they told me it was just a virus. This continued for three weeks until one day I couldn’t function in school and went to the nurse pale as a ghost. My mom picked me up and brought me home where I vomited. She called my neurosurgeon who told her to rush me to the ER. When I got there, I was informed that my whole shunt had detached from my head. The doctor was surprised I was still smiling and laughing.
I had ten more surgeries that year due to an infection in my spinal fluid. I had an additional 20 surgeries between 2014 and 2015. I then had ten revisions between 2017 and 2018. In total, I have had over 40 brain surgeries.
I presently have three shunts in my head and suffer daily from severe right eye pain, headaches, stomach pain along the tract of my shunts, and dizziness. I have visited many doctors, but I remain a mystery case. I have tried numerous medications, procedures, holistic medicine, etc. with no relief or improvement. What is really frustrating to me is my symptoms worsen by the day, yet all my scans come back normal. Through my journey though, I have learned to stay strong and never give up. I do not give up hope that one day I will feel better and be able to live my normal life again.
Dealing with hydrocephalus takes an emotional toll on me but I am blessed to have the support system that I do. I was in the hospital every month my senior year of high school. However, I met such a great group of friends who were my support system and family. They came to surprise me on my 18th birthday at the hospital and had a celebration for me.
I do not let my condition stop me. I am now pursuing my childhood dream to become a nurse. While in nursing school at Adelphi, I was told by the dean that I didn’t have what it took to be a nurse. After hearing this, I was distraught and asked to leave Adelphi. I transferred to Suffolk County Community College and it has been the best decision of my life. I have met some amazing people who encouraged me to never give up on my dream. I recently graduated nursing school and am currently applying to jobs. The care that I have received throughout my life from the amazing nurses have inspired me to pursue this career.
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