Hi, my name is Aimee and I am a 20-year-old with hydrocephalus. When I was born, I had a 50/50 percent chance of survival.
My mum was in hospital for three weeks before she had me and I was three months premature. This caused me to have a brain haemorrhage, which then caused me to have hydrocephalus.
I have a fixed pressure shunt, which is called a VP shunt and helps my spinal fluid go into my stomach.
As you can imagine, it was quite a difficult and terrifying experience for my family. When I was born, I was incubated, weighed only two pounds ten, and was practically see-through. My mum and dad couldn’t hold me for at least a few days after I was born.
Living with hydrocephalus is a challenge and is emotional. However, it’s also the greatest gift I could have ever asked for, because if I didn’t have my condition I wouldn’t be here.
It doesn’t affect me massively, but I get pressure pain headaches when the weather changes. This usually happens around October time, when it goes from hot to cold and starts to rain and snow a lot more. I process stuff a little slower than other people and I get brain fog quite a bit. I am lucky enough to not be really badly affected by it.
Hydrocephalus comes with a few challenges. It affects us hydro-warriors when we go on an airplane as, when we go up, the pressure rises. l ‘m lucky enough not to be affected loads by it, but I experience sharp pain when the plane goes up. Then I’m fine once we’re up in the air, which is normal.
My biggest challenge I face with hydrocephalus is feeling terrified that I need to get my shunt replaced or scared when I haven’t had it checked in a while.
I had to be rushed into hospital a few times within the first 13 years of having my shunt. Sometimes I had to go in to get a head tap (also known as a spinal tap but just in the head) to drain the fluid or due to pain in my neck.
When I was 13 years old, I used to absolutely love gymnastics and acrobatics. I always knew the risks of what was going to happen if I wasn’t careful enough, but I didn’t let it stop me until I went away with my family. I was doing gymnastics with my sister, and I felt a little snap which felt like a twig breaking. I didn’t think anything of it and thought I had maybe just pulled my shunt. However, a few hours later, I developed a headache. I took paracetamol, but it didn’t go away. Two days later, I had the worst headache. It felt like someone was holding a brick onto my head and then lifting it up and dropping it. I then got rushed to hospital and I ended up having to get a new shunt, as I had broken it. It took me around three months to recover and go back to school. I then made the decision to stop doing gymnastics, which was my own choice for my safety. But don’t let hydrocephalus ever stop you.
I’m 20 years old and happy and healthy. I work in a nursery, which has always been my dream job. I’m working towards my driving, and I am a rainbows leader at my local girl-guiding unit.
Even though us hydro warriors have a serious condition, we don’t want to be treated any differently as we are all the same.
Spend as much time as you cannot on the negative but on the positive. As I’ve shown, it’s possible for hydro-warriors to live a happy and healthy life and do the things that they dream of and want to achieve in life.
