Child's name: Charlie
Support Coordinator's name: Emma Stoddart
Location: Yorkshire
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.
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. He is mainly non-verbal which is one of the hardest things, he cannot tell you if he’s in pain or what hurts. In other ways you get really good at understanding him without words, thank you Justin AKA Mr Tumble!
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. We have been supported since he was small by the Child Brain Injury Trust and we have been so grateful for their care and support. A journey like ours is often very lonely and very misunderstood, without the right help you can slowly find yourself drowning. It took time to understand our new situation, the Child Brain Injury Trust helped us to understand, to accept and in a strange way to grieve. Life would never be the same again and that is a hard thing to comprehend. They have listened when we cried, supported us when we were lost and they are one of the most “human” charities I have encountered.
Emma Pilling (Mum to Charlie with Hydrocephalus)