My Hydrocephalus Journey

Hello reader, welcome to my blog. Since this is going to be the first post that you are going to read, I will be using this space to give you some background information as to how and why I am here today. On August 14, 2007, I felt like my life was over. I anticipated a dark and devastating future, I felt trapped inside a dark, endless tunnel. Before my doctor visits at the time, I had excessive migraines and extreme nausea. I struggled with having an appetite, staying awake, and while walking, I felt like I was collapsing. After I went to the clinic, the only diagnosis that the doctors established was that I had a fever. My family and I were not satisfied with this answer, so we persisted on a better finding. Eventually, the majority of my doctors said that I needed to undergo a risky surgery and that it was actually a life or death situation. 

August 14, 2007. Black shaded area demonstrates the excessive amount of water in my brain.

A thousand visits and a plethora of professional researchers later, surgeons discovered that in reality, I had Hydrocephalus. It is a medical condition which causes an abnormal accumulation of cerebrospinal fluid in the brain. Usually, babies that are born with Hydrocephalus experience head enlargement with numerous surgeries throughout their lifetime. Hydrocephalus was not in my family genetic medical history and the doctors informed me that it was incurable. So, I was intrigued as to why I had received this diagnosis. I have to add that I was also broken-hearted and scared for my own life. I couldn’t believe that this was happening to me. 

I worried that this disease was going to kill me and that I wouldn’t be able to go back to my normal lifestyle. After the MRI and CT scans were performed, I was immediately due for a cerebral surgery. In order to survive, a shunt on my head was necessary. In other words, it is a hole or a small passage which allows the movement of fluid from one part of the body to another. In my case, my cerebral fluid would flow directly towards my stomach through rapid absorption. Hence, clearing out my skull. The surgeon stated that I would have to maintain the shunt in my brain for the rest of my life, due to which I lost the majority of my speech, memory, gross, and fine motor skills. For exactly three years post surgical date, my shunt restricted me from participating in any form of physical activity and enjoying life as a child.

I was the elephant in the room. With my hair as short as my male peers; it made me feel less feminine, even though my favorite color has and always will be pink. My friends turned into my tormentors. My bald head was the reason why the tongues wagged around me so rapidly and why those horrid “tee-hees” were formed. My appearance and physical disability left me lonely within my community and peers. All of that being said, my biggest support system was where I felt the safest, at home and church. My family and loved ones have always given me the support and validation that I craved but could never attain. They were a God-send for me and my recovery. 

 In the middle of the night on August 15, 2010, I suffered my first seizure. My parents rapidly took action and rushed me into an ambulance with them to undergo another brain surgery. The surgeons decided that inserting another shunt was essential because of the unexpected seizure. I was put in a coma for what felt like an eternity but in reality, it was for five days. Different groups of professionals were investigating reasons as to why the shunt seemed ineffective for my body. On the fifth day of lying on that hospital bed, my shunt was finally removed after two brain surgeries in one week. At that moment, I was miraculously cured from hydrocephalus! During my initial diagnosis, the entire medical team had announced the news to me and my family that hydrocephalus does not have a cure. This was the day I was able to see light again. Removing the shunt was truly the first of many more victories for me and my loving support system. 

After being at the hospital for a month, I received support from the physical and occupational therapy team at the Spaulding Rehabilitation Hospital. I was there for approximately three weeks under intensive care to get back to my normal life. While I was there, I was counting my blessings even more. It made me realize how much my family has been a huge impact in my life during tough times. 

Other children who have been living there for the majority of their lives gave me perspective on how other people experience tough health situations every day. Through our frequent UNO games, I was able to form bonds with many different kids. Connecting with them gave me the perspective I needed to focus on my recovery and wellbeing. This change of pace showed throughout my physical and occupational therapy sessions, where I felt motivated and confident to get my normal life back. With my state of being, I was able to go back home rather than needing extensive treatment at the therapy facility.  I worked diligently to make it out of rehab and return to school.

After I left rehab I was homeschooled for a few months. In spite of my rapid recovery, I still struggled with being comfortable with my short hair. When I got back to school, I continued to encounter obstacles beyond my medical problems. For example, the school system decided to put me in a Spanish bilingual class assuming that I would struggle with academics and needed to learn at a slower pace. This was out of order and very difficult for me because I grew up in an English and Portuguese speaking household, not Spanish. However, I proved those who thought less of me, that I could persevere and potentially grow through my tough experience. 

Graduating middle school was a major milestone with earning honors in every class. In addition, I joined a band in middle school, in addition to joining the ZUMIX (a nonprofit arts organization) music program to keep myself occupied. I am passionate about the study of music and singing (BTW). I was involved in art and sports activities which challenged me mentally and physically. I even had my own radio show named Oi, Do Brasil! Fast forward to high school, I achieved a 3.95 GPA and a full ride to college.

Five years ago, I would have never imagined myself to be where I am today. If I listened to everyone that told me that getting back to my “normal” life was impossible, I would not be here right now. Being diagnosed with hydrocephalus has made me a powerful and more independent person. Hydrocephalus has given me strength, hope and purpose. Ever since then, I have been persistent instead of giving up.Whenever you feel life has given up on you, look at yourself in the mirror and tell yourself you are stronger than you think. Most importantly, my belief in God gifted me strength.