Diagnosis and early surgeries
A few days after I was born, my mum noticed I was sleeping a lot more than usual and bringing up my milk not long after each feed. Concerned, she contacted the doctor, who ran some tests. The results were worrying, and I was sent straight to All Saints Hospital, where I was born. After further tests, I was rushed to Great Ormond Street Hospital, where my parents were told that I had meningitis.
I spent almost the first year of my life in Great Ormond Street Hospital, undergoing several surgeries. During that time, I died eight times and had a shunt fitted to drain fluid caused by hydrocephalus. On my first birthday, my story was published in the Daily Mirror national newspaper as "The Boy with Nine Lives."
When I was seven, I had to have my shunt replaced at another hospital, as it had become inadequate as I grew. The new "Catherine Wheel" style shunt was designed to grow with me. At the same time, I underwent a procedure to strengthen my jaw by grafting part of my rib.
School and early career
These surgeries left me with some challenges, but I still tried to live life as normally as possible. Unfortunately, children can be cruel, and I was bullied for looking a bit different and struggling with some things.
Throughout school, I struggled with certain things. A lady helped me with my studies during primary school, and I’d love to reconnect with her one day to thank her for believing in me. During my primary school years, I was also attending another school as it was identified that I had special educational needs. I was back in just one school for my secondary education and I tried my best but keeping my interest and concentration was hard and I did not get great grades in my exams.
My dream was to join the police force, but I was told this wouldn’t be possible because of my shunt. My greatest dream had been shattered, but I continued on, getting a job in a local supermarket and building a life for myself - not letting my restrictions hold me back.
An unexpected fall leading to setbacks
In 2019, I married for the second time and settled into a happy routine with my wife. However, everything changed in August 2021 when I fell at work, hitting the back of my head. I had a headache and back pain over the weekend but thought little of it. On Monday morning, I felt sick on the way to work. My wife decided to take me to A&E (accident and emergency), concerned that the fall might have concussed me. After a CT scan showed no immediate issues, I was sent home.
Over the next few months, I had the odd headache, found that I was dribbling at times and both my memory and balance were less reliable than they had been, but just carried on with life. Colleagues at work started noticing how tired I looked, but I just put it down to working long hours. I would spend days at the weekend in bed asleep, which was not like me at all, and my wife was constantly telling me that I was being irritable and taciturn, which was not who I am.
By Christmas 2021, things took a sharp turn. I fell asleep at the dinner table and spent much of Boxing Day in bed, which was highly unusual for me. My wife insisted we call 111, and after hours in A&E, I was admitted for observation. On 2nd January, I collapsed and fell unconscious whilst in hospital and I was rushed to St George’s Hospital, where it was discovered fluid was building up on my brain to a dangerous level and needed to be relieved.
I underwent emergency surgery, during which a new, parallel shunt was fitted. Complications kept me in the hospital for nine and a half weeks, including time in Neuro-ICU, where I had to be resuscitated multiple times and eventually received a tracheostomy to help me breathe.
I spent six weeks in Neuro-ICU in St George's, having to be resuscitated on three separate occasions as my airway kept collapsing, and eventually having a tracheostomy to help me breathe. There was more than one occasion when I thought I could not go on and could not face what was to come, but the idea of leaving my wife and our dog kept me strong.
Recovery and more setbacks
On Valentine's Day, I was moved back from St George's to our local hospital and on 2 March 2022, I was finally discharged home, to begin the long process of building my strength back up and seeing if there were any long-term after-effects of this recent episode. I did physiotherapy and gradually built up my strength to return to work in July 2022.
After six months away from work, I returned in July 2022. However, my wife noticed subtle changes again later in the year. I was lethargic and often sick, and my GP found no immediate cause for concern. Unconvinced, my wife contacted my consultant at St George’s, who reviewed my CT scans and immediately called me in. Four days before Christmas 2022, I underwent another shunt revision. after two weeks I was discharged without having had any further shunt revisions, but having had a Bolt inserted in my head for ten days to measure my brain pressure.
In May 2024, I started feeling unwell again—tired, irritable, and off balance. My wife and brother-in-law urged me to seek help. After being admitted to St George’s, I underwent extensive monitoring, including ten days with a bolt inserted in my head to measure brain pressure. No shunt revision was needed this time, but the uncertainty remains daunting.
Living with long-term effects and supporting others
Living with the long-term effects of meningitis has been challenging, even decades after my diagnosis. I struggle with memory, balance, and cognition, and I’ve recently been diagnosed with Autism and ADHD. Despite it all, I try to take life one day at a time.
After coming out of the hospital after my first revision, I decided that I wanted to do something to try and help raise awareness of meningitis and to offer support and a safe space for people to ask questions or seek advice or just to talk about what they have experienced. I have set up a Facebook group called Meningitis Matters and would welcome anybody who wants to join, to get more information or share their story so that others know that they are not alone.
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