Recently we have recently been nominated for an award at the Child Brain Injury Trust Diamond Awards, the nomination is for the “outstanding family award” and we have been nominated by our ABI co-ordinator because of the obstacles we have faced since our little boys brain surgery, how we have pulled together and the steps we have taken to raise awareness of Hydrocephalus (the condition that caused his brain injury) and the support we have given to charities and families like ours.
Our little boy Charlie has acquired, communicating hydrocephalus. In short Charlie can no longer drain the fluid around his brain (CSF) naturally.
Charlie was diagnosed at seven and a half months and his shunt was fitted two days after the diagnosis of hydrocephalus. His diagnosis was delayed and it was this delay that caused significant damage to his brain.
Until the days preceding Charlie’s surgery I can honestly say we had never heard of hydrocephalus, I often reflect on how strange it is that something which we did not even know the name of has changed our lives completely. We attended what we believed would be a routine paediatric appointment on a Monday and by Wednesday he was in theatre undergoing brain surgery. We heard words we had never heard, like hydrocephalus, sunsetting, VP shunt. The shunt they fitted now keeps him alive, it could fail at any time and that is terrifying, the thought of it is the dark cloud in the corner of every day.
It took time to understand our new situation, we found the Child Brain Injury Trust and they 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.
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!
On our journey we have felt isolated, it is impossible to explain to people what we are facing. Very few people have heard of Hydrocephalus, this makes things so much harder. How could things be so serious if people have never heard of the illness. We were largely alone in this strange new world, just the three of us trying to find a new path. At times we have been broken and utterly lost and in the middle of this we started a blog “about a boy and hydrocephalus” firstly on wordpress, then Facebook and then Instagram. Initially it felt like therapy and if a few new people heard the word Hydrocephalus and understood a little more then even better. Our content is now recommended by charities, our posts shared world wide and it’s helping people and that’s amazing. For every child that is spared Charlie’s suffering because they are diagnosed sooner this is life changing. More importantly families like ours are connected, they feel less alone and that is one of the reasons we were nominated for the award. The messages we receive from families often bring tears, we had no idea that sharing our crazy, chaotic life with others would have such impact. One comment read “I’m not one to comment but I just had to thank you for being that little beam of light on some of my dark days” and it’s quite overwhelming to think we have had such an impact, as a family that found themselves in that darkness the knowledge we are helping others and they are thankful for us is so very special.
The nomination is a wonderful thing, we’re still a little in shock, the judges will now decide upon a winner. The thing is every single family facing challenges like ours are inspirational, I can’t even begin to explain how inspirational, and I’m so pleased and proud that we can help them just as the Child Brain Injury Trust helped us. Win, lose or draw the knowledge that we have helped will always be the greatest prize and on the days that we feel battered we remember just how far we have come.
If you would like to know more about life with Hydrocephalus and childhood acquired brain injury please find us on Facebook and Instagram About a Boy and Hydrocephalus.
The awards ceremony is on Friday 4th March 2022
Here’s a link to make donations to the Child Brain Injury Trust – Make a Donation – Child Brain Injury Trust
About a Boy and Hydrocephalus 