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Hydrocephalus Awareness Week 2021 - Charlie's Story

5th March 2021

 

Charlie's Story...

"Shine have helped us by providing literature, support to nursery and introducing us to other families."

What was life like before you received support from Shine?

"This week it’s Hydrocephalus Awareness Week and it’s the perfect opportunity to give a bit of background to our story. An opportunity to try and explain what this illness is and help to spread a little awareness of our own. I know from personal experience just how much this life changing condition is unknown to so many. We had no knowledge of this illness until it literally ripped our world apart, how is it that possible for an illness which is said to affect up to 1 in 1000 babies born every year to be so unknown? An illness which is just as common as down’s syndrome and more prevalent than spina bifida or brain tumours. Hydrocephalus is the most common reason for brain surgery in children, so how is it I knew nothing of it until my baby was being prepped for surgery?

Sadly, the lack of knowledge of the illness is not just limited to parents like us, it is unfortunately very misunderstood by professionals too. Before our little boys’ surgery, I had no idea what a ‘hydrocephalus baby’ looked like. I now look back at pictures of our baby roughly three years ago and realise with hindsight and knowledge the signs of hydrocephalus were there to see but sadly I didn't have that knowledge then. So how did we get here?

Charlie has ‘acquired’ hydrocephalus which means his condition developed at some point after birth. We have been told it was likely a bleed or low grade infection that caused the blockage that stopped the CSF draining, we don't have a clear cause and that can sometimes be hard to deal with. Charlie was born with a head plotting at around the 50th centile on growth charts, at around 5 months we noticed his head was growing rapidly and he was outgrowing hats in a period of weeks.

We raised concerns with our GP and Charlie was seen by a paediatric consultant at roughly seven and a half months of age. That week was a whirlwind. We visited the outpatients clinic on the Monday and following an ultrasound through his open fontanelle Charlie was admitted straight to hospital. On Tuesday he had an MRI and then we were transferred to the LGI Neuroscience ward at speed in an ambulance. We were informed on arrival he required surgery and that was the first time anyone had said ‘hydrocephalus’. On Wednesday Charlie underwent brain surgery to fit a shunt, I will be honest that everything had happened so fast that we really didn't understand nor appreciate what was happening, I'm quite sure on reflection we were in shock. On Thursday we were allowed to return home with instructions of timing for painkiller doses and a thin booklet on hydrocephalus, shunts and signs of shunt failure. On Friday we took Charlie to music class.

Looking back it all seems quite surreal and the weeks and months which followed are equally surreal. We thought the shunt had ‘fixed’ him, nobody discussed developmental delays or acquired brain injuries and so we were very naïve and oblivious to the reality of our situation.

Charlie started nursery two months after his operation and the nursery have always been a shining light in our story, they accepted him without question and have learnt with us and helped him to achieve great things. At the time he started nursery we thought the only real issue was the shunt and we had detailed discussions with the setting about this, we knew he couldn't roll or sit independently but thought he would start to learn those skills again now.

A few months after his surgery I started to look for help, for some clarity as to what we were dealing with as his delays weren't improving. Luckily, the paediatrician had retained him as a patient and referred to the Rainbow Child Development centre who assessed him and made various referrals. However we still didn't understand hydrocephalus and nobody else seemed to know about it when we talked about it."

How has Shine supported you?

"Shine have helped us by providing literature, support to nursery and introducing us to other families.

I started to Google, and I found the Child Brain Injury Trust (CBIT) who were amazing and actually the first people who helped me appreciate what had happened and I think that was the first time I really sobbed. They helped us to understand the new situation we found ourselves in and offered us a hand to guide us out of the darkness. Through them we found Shine who worked with CBIT and the nursery. The literature they provided us with was brilliant to help us and others in Charlie's life.

Through the charities we met other families like ours. It can be very isolating to be in a situation others struggle to understand. When we started to attend the Little Stars Zoom coffee meetings it was nice to meet families who were experiencing similar things to us, even though every family is at a different stage in their journey. I reasoned from conversations with people that hydrocephalus was a very unknown illness for so many, it was for us until it literally changed our lives for ever.

I decided to share our story, firstly in a blog and then via a Facebook page. Through these I have connected with some lovely people who have both helped us and been helped by us, and we have made some lovely friends. It's almost a shorthand we can speak because they understand the very different life we live without having to explain.

Charlie is now three and a half years old, and three years post op, and we have learnt a lot and we still have a long way to go. Hydrocephalus is not a blip, it is all consuming, it changes everything. Sadly, we had to find our way without directions and for a little while we were lost in the dark with no torch. We stumbled, we got lost, but along the way we found some amazing people who either helped us to understand or who learnt with us and helped to rebuild Charlie’s life. It’s a rollercoaster but the highs are like nothing I've ever experienced. We have been enriched by the people we have met and the beauty in our child and his resilience.

He has worked so hard and achieved so much and we are so unbelievably proud of the happy determined little boy that he is. We have suffered difficulty, but we have also been blessed to meet people that believe in our boy and want to help him in any way they can. I want everyone to know what this illness is, to know the signs and symptoms but also to understand the fallout of this illness and its lasting impact. For the sake of our amazing little boy, we strive to make change and hope we can make a difference. The handbook needs to be bigger, the directions for help clearer. Together we will move mountains.

Click the links for our Wordpress blog and Facebook page."

 

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