Charlie's Story
At just seven months old, Charlie was diagnosed with Hydrocephalus and underwent brain surgery at an age when most babies are just beginning to explore the world around them. Nearly eight years on, Charlie continues to shine: a true example of courage and resilience.
His mum, Emma, has turned their family’s journey into a powerful force for good. Deeply inspired by the support she received from the Child Brain Injury Trust, Emma joined our team in 2023 as our Corporate Fundraising Manager, now helping other families find the same hope and strength she once needed.
I’ll be honest at times I’ve been sad, not with what I’ve got but with what I lost. When you have a baby you make plans, you don’t ever question your expectations, you make plans about their future. As a new mum you join baby groups and a constant cycle of comparison begins, did your baby smile yet, coo, roll over, sit up? You think you know the path you will follow, you’ve bought the pack of milestone cards to mark each momentous occasion, then things seem to go a bit off course. Your baby did roll but isn’t doing it anymore, he can’t sit up. You start to feel a little bit out of step with the other mums and you feel the first bite of panic, but you tell yourself it’s ok, your baby will get there, it will just take time. You wait, you watch, you encourage, you do everything you think you should and things aren’t getting better and there is a twinge of sadness watching his friends learning new skills and developing in the way you had imagined your own precious baby would.
When you finally sit in a room with someone who tells you that your beautiful boy needs brain surgery, all your plans are gone you just don’t necessarily fully grasp it at that moment. You are swept up in a whirlwind that moves so quickly you can barely breathe. They operate and in a naïve way you think “ok they’ve fixed him”. They send him home with a small booklet of what to look for if his shunt they have fitted fails and at that moment that seems to be the only issue, what if it fails.
The damage to Charlie’s brain has affected every aspect of his development and life is often hard, added to that his shunt could fail at any time and shunt failure can cause outcomes so terrible it makes you sob just to think of it.
I lost something the day we walked into that paediatrician’s office and it’s not something I’ll ever get back…
Our son Charlie has a condition called Hydrocephalus which means his body cannot naturally drain the cerebrospinal fluid (CSF) around his brain, this build-up of fluid caused an acquired brain injury when Charlie was a baby. Charlie underwent brain surgery at seven months old to fit something called a shunt, this essentially drains the fluid from his brain into his tummy because he can’t do it himself.
The brain injury he suffered caused global developmental delays and it takes numerous professionals to support him both medically and developmentally. We currently work with 13 professionals, he has constant appointments and therapies, it’s a lot of plates to spin.
Charlie is speech delayed and has partial hearing loss, which can make communication very challenging. He isn’t always able to express pain or emotions, but thanks to the incredible support network around him, Charlie’s communication is slowly improving. He has started to acquire language through both spoken words and British Sign Language, and every new word or sign feels like a victory.
Charlie’s education looks a little different from that of his peers, but he continues to amaze everyone around him. He can now read confidently, count independently, and has developed a real passion for puzzles. Every day, he surprises us with his determination, curiosity, and love of learning.
As a parent, I’ve learned that Acquired Brain Injury (ABI) is often misunderstood, and there is currently no dedicated category within Special Educational Needs (SEN) to reflect this unique need. That’s why the support and training provided by the Child Brain Injury Trust (CBIT) have been absolutely life-changing. Their guidance has helped Charlie access education in a way that works best for him, and they’ve helped us as a family to better understand and navigate the challenges that come with ABI.
The care and compassion shown to us by CBIT inspired me to want to do more to support them. In 2023, I was fortunate to join the charity as their Corporate Fundraising Manager. It was a complete change of direction and leaving behind an established career was scary, but I knew firsthand the difference CBIT had made to our lives, and I wanted to help bring that same support to other families. It’s an honour to represent CBIT and to work alongside people who truly understand what life after brain injury looks like. I love being able to share with others the reality of ABI and to show why this charity makes such a profound difference.
We did lose something the day of Charlie’s diagnosis, but we also gained so much more than we ever expected. Our lives will always look different, but within the challenges there is joy. CBIT showed us that Charlie’s brain injury was not the end, they taught us to have hope and because of that, Charlie’s life is brighter, happier, and full of possibilities.
Emma Pilling (Mum to Charlie with Hydrocephalus)
Charlie and his family are supported by CBIT's ABI coordinator, Emma Stoddart.