Harry’s Hydrocephalus Awareness Trust (Harry’s HAT) was founded in 2018 by Harry’s family and friends in response to the need they identified following his diagnosis with hydrocephalus, often called “water on the brain.” The charity aims to raise awareness, fund research and help signpost families affected by hydrocephalus in children.

The Amazing Charity Raising Awareness of Hydrocephalus - the Most Common Reason for Brain Surgery in Children
Harry and his family. Photo: Bridget Baxter photography

Caroline Coates revealed that when she was 36 weeks pregnant, Harry was diagnosed with an arachnoid cyst which caused hydrocephalus, meaning that Harry would need a permanent shunt to survive. The shunt, which drains the fluid from the brain, was inserted when Harry was just eight weeks old.

In fact the shunt, which keeps Harry alive, was invented by Roald Dahl in 1962 after his own child was injured in a serious accident. The technology surrounding this hasn’t really moved on since then. 50% of shunts block within the first two years, requiring further brain surgery, which was the case for Harry.

As the only UK charity to focus solely on hydrocephalus and its impact, Harry’s HAT aims to make life better for children with hydrocephalus, as well as for those who love and care for them.

Caroline shared: “When he was first diagnosed, we found that whilst there were other great organisations out there, we kind of struggled to understand much about the condition. Most importantly, we really wanted to talk to other families who were going through the same issues and that was really tricky.”

Originally the plan was to fund research and help neuro nurses who look after children with the condition to access more training. However, the charity grew quite quickly as more families across the UK got in touch and with such support, Harry’s HAT became a registered charity in 2019. 

The Amazing Charity Raising Awareness of Hydrocephalus - the Most Common Reason for Brain Surgery in Children

“We found that there’s very limited research around hydrocephalus, it’s very common as one in 770 babies born in the UK is diagnosed with it. When you have a baby, as a routine check, one of the things that you have to do is have their head circumference measured. But most people don’t know what they’re looking for. And we believe passionately that if people knew that the reason they’re measuring the head circumference is to look for fluid on the brain and indicators of that – then people would make sure that child got measured. You know, we’re finding that children are slipping through, especially to COVID, routine head circumference measurements aren’t happening as much as they used to.“

More recently, the charity has published its first book, ‘Hydrocephalus: What I wish I’d known’ aimed at families affected by hydrocephalus, especially for those at the start of their journey. The 42-page book is packed with parent experience stories including first-person hints, tips and useful resources to help navigate the new ‘normal.’

The Amazing Charity Raising Awareness of Hydrocephalus - the Most Common Reason for Brain Surgery in Children

The book, released in January 2022, is a much-needed resource for neuro units all over the globe. “When you’re faced with a really serious diagnosis, they say if you’ve got any questions, and at that moment, you can’t think, so using other parents’ experiences, we put together some hints and tips of things just to get people thinking. For instance, there’s information on signs of shunt malfunction, and there’s also a whole resource page which kind of tells you them about other organisations.”

Prior to this, Harry’s HAT had been making waves across the board as Caroline’s neighbours had nominated both Caroline and her husband Matt, founder and Trustee of Harry’s HAT, for a Christmas surprise from Heart Radio and Mastercard. Caroline and Matt were asked to disappear for a few hours from their Hampshire cul-de-sac and upon returning were shocked to see neighbours, film crews and a massive screen showing supportive messages from family. They were quickly filled in by Katie Piper, who was sent on behalf of Heart Radio, to show support and congratulate the couple on the amazing work they do.

The charity has also recently been gifted £28,000 by Heart Radio’s owner Global. The money will be used to fund the first ever full-time staff member for the charity.

Looking at long-term goals and developments, Caroline hopes to hire more paid members of staff given the expansion of the charity and is also in the process of developing their peer-to-peer offer. 

In terms of raising awareness and support, Harry’s HAT has initiated a series of parent groups associated with the different neurosurgical hospitals so that parents can meet other mums or dads who are going through the same thing and build face-to-face contacts. 

In June this year, (originally March, but postponed due to COVID), Michael Gove MP will host a Parliamentary Reception at the House of Commons for Harry’s HAT aimed to raise awareness of the importance of hydrocephalus and the impact it has on the individual and on the NHS. To boost awareness, a national campaign on the vital need for head circumference measurement is an important next step in raising awareness of the cause. 

“The more people that know what Hydrocephalus is, and the earlier the diagnosis, the earlier the child is diagnosed, the more chance they’ve got of having a really good outcome.” 

To find out more about Harry’s HAT and learn about hydrocephalus, click here

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Uzma Gulbahar holds a Bachelor of Arts in History from the University College of London. She is particularly interested in exploring untold stories surrounding marginalised groups, identity and culture.

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