Patient Story – Libby K

Sunset Eyes

Up until ten weeks old, I was a happy and healthy baby. It all began when my Mum, being a nurse, realised that my vision was not as it should have been, and that I had ‘sunset eyes.’ Of course, this was very alarming for my parents so they took me to my GP to get it checked out. They were advised to take me straight to hospital, where I had an MRI scan, which found a tumour in the centre of my brain. The doctors, who told my parents the news was good, said that the neurosurgeons were expecting me, and my surgery was performed the next morning. After nine hours of surgery which was successful, I recovered over the next month or so. Six months later, I had a VP Shunt fitted to relieve my hydrocephalus which by this stage had become quite pronounced, meaning that I found it tough to hold my own head up.

Living with a shunt

I am now 19 years old and still have the same shunt! Specialists have previously told me that it is likely that my shunt is no longer working, but in many ways, this is a huge positive for me as it means that my brain has learnt to cope without it. I find this quite incredible, considering it was such a big surgery. I didn’t walk until the age of two but I am very lucky in that I live a very normal young adult’s life. That’s not to say I find everything easy. I do struggle with some of the common conditions that hydrocephalus can cause, but I have found there are usually ways of coping with them so they don’t stop me enjoying life. I suffer from mild anxiety so I have learnt to carefully plan everything in advance. At school, it took my teachers and I some time to work out how I learn best, but they were really supportive. My coordination skills are not always on my side which is a challenge because I really enjoy sport. Running and singing are also real pleasures. In fact, singing has increasingly become a huge part of my life over the years. Over the last 18 months, with the support of my lovely singing teacher, I have achieved the Associate of the Royal School of Music Diploma (ARSM), which I am so very proud of, especially because I never thought I would achieve something like that.

Future dreams

Singing is something that I find to be very beneficial for my anxiety and is my ‘go to’ coping strategy if I am having a tricky day – and it always makes me smile. Last year, I completed my first ever half marathon running event, for Children with Cancer UK which was also something that had been on my bucket list. It was a fabulous feeling to get it ticked off! I work with children in a nursery, as an early year’s practitioner, and am currently also in the process of completing my Level 5 Childhood Studies Foundation Degree, at Yeovil College University Centre. I love my job, and the degree, although tough, is allowing me to gain further knowledge and understanding so that I can continue to support children as best as I can. I have some wonderful friends at home, work, and college. I still have many aspirations for the future. Although it sometimes takes a lot of resilience and courage, I don’t let my condition get in the way of my dreams.

Libby, March 2024