Wali, 23

I was diagnosed with hydrocephalus when I was 8 months old and from that moment onwards it looked like a never-ending journey for my parents to go back and forth to the hospital after every one or two years until my body accepted the shunt at around age 3 or 4. Before that, my shunt used to get blocked often.

After around my 4th or 5th revision I spent the next 15 years of my life without needing surgery. Surprisingly, I wasn’t really aware that I had hydrocephalus since it didn’t bother me. I lived my life normally. However, at that time I had two shunts in my head because my last surgery was done in an emergency where the doctors didn’t have time to take out the old shunt and I lived with double shunts for 15 years up until 2015 when my chronic headaches started.

It was February 2015 when I started to get these really bad chronic headaches, and they would last for several minutes in which I could do nothing. It was then that I actually found out that I have hydrocephalus. I knew I had some kind of thing planted at both sides of my head that connects to my brain. I never knew what it was and since it never bothered me I didn’t even pay attention to it. Once I woke up in the middle of the night experiencing a piercing pain which I couldn’t handle. I had to wake my parents up. Dad immediately sensed that it was not a normal headache and something was wrong. Instead of seeking medical attention my dad gave me medicine I used to take when I was little. The headache calmed down but they didn’t go away. That’s when I started getting chronic headaches during my classes, which made it hard for me to focus in class.

Later in March while at home, my terrible headache returned and I lost consciousness. I was rushed to the hospital where I’d been going since I was 8 months old. They gave me medicine which helped, so my dad took a “Leave On Medical Advice” and decided to bring me home. A few days later the headache resurfaced and I was rushed back to the hospital. The doctor who later operated me told dad the entire procedure I had to go through. My dad got a little tense and decided to try another hospital. There the doctor simply said that all they would do is perform surgery for a third shunting which could have been worse. (Please note that all this, I was told later on.) I was unconscious to actually know what was happening. I was on the verge of suffering from a hemorrhage. At 6am I had surgery to remove the two shunts and to insert a temporary external drain to drain out all the bleeding that had occurred during the process. I was bed bound in the hospital. I was only able to get up if a physiotherapist helped me and if the drain was closed, but only for five minutes. Twenty days later, I was operated on again for a new shunting. On the 27th of March 2015 I finally got discharged.

I did not write my mock exams and I suffered greatly academically. I wrote my CIEs and ended up getting a CDE. I got a C in math only because I was able to get help from my math teacher during her office hours. I was devastated seeing my transcript but decided not to give up. I opted for Business since that was the subject I did well in. I worked as hard as I could and when we finally received our results I looked at my grades and was pleased with what I received. My grade dropped in math but I was not disheartened. I ended up graduating from University pursuing what I love, Computer Sciences, and started my career. In February 2019, I started my own IT-based company with a couple of friends and it has been doing great for a startup!

It’s been five years since my last revision and I have been living normally and doing what I love. I know that somewhere down the line I may need another revision but well that’s okay. Life has its ups and downs, but you just have to fasten your seatbelts and enjoy the ride.

All in all, I would just like to say that life knocks you down in several ways, but it’s your decision to get back up or not! Have an optimistic approach to life because your interpretation and the way you choose to deal with things matters a lot. Peace!

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 900 words long. Submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: communications@hydroassoc.org with the subject line “Share Your Story”.

Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.