Harry's HAT

Every year, around 1 in 770 babies in the UK are diagnosed with hydrocephalus: a life-long condition that can strike without warning, turning family life upside down.

Hydrocephalus occurs when excess fluid builds up inside the ventricles of the brain, causing harmful pressure. Without urgent treatment, this pressure can cause life-changing disabilities and, in some cases, can be fatal. 

No family should have to face that alone.

Harry’s Hydrocephalus Awareness Trust, or "Harry’s HAT", exists to make sure they don’t.

When a child suddenly needs emergency care, parents are often rushed to hospital with little notice, trying to absorb complex medical information whilst feeling terrified. We help to steady the ground beneath them. We provide clear guidance, so families know what to expect and practical support like comfort packs for those who arrive with almost nothing. We also bring families together at events, so they can meet others who truly understand what they’re going through.

Siblings need support too. They can feel scared or left behind, without knowing how to express it. Our resources help them understand what’s happening in gentle, age-appropriate ways and help parents keep everyone included.

We also campaign for earlier diagnosis through our Get-A-Head initiative. Too many babies wait too long for answer. By raising awareness of early signs and championing the importance of head circumference checks, we’re working to ensure more children receive timely treatment.

Your donation to our Lifeline Appeal will help us continue this vital work. You’ll be helping parents feel less frightened, siblings feel seen and children get the care they deserve.

I am truly honoured to present this year’s BBC Lifeline appeal for Harry’s Hydrocephalus Awareness Trust, also known as Harry’s HAT.

This condition affects thousands of children across the UK, yet so many people have never even heard of it. For families, it can be a frightening and overwhelming diagnosis that changes everything in an instant. 

That’s where Harry’s HAT comes in.

Their small, dedicated team offers clear information, caring guidance and practical help for affected families. They work to improve understanding of hydrocephalus among health professionals, ensure families feel supported, and campaign tirelessly for early diagnosis in babies. They also bring families together who are going through similar journeys, helping to reduce isolation and create a sense of community, because no one should face this alone.

With your help, Harry’s HAT can continue to make a real difference: offering hope, guidance, and a lifeline to those who need it most.

Jenny and Simon’s son, Jethro, was diagnosed with hydrocephalus at just six weeks old, after his head circumference suddenly jumped from the 25th to the 75th percentile. He underwent his first brain surgery at only 10 weeks old. In those frightening early days, when everything felt overwhelming and their world had been turned upside down, Harry’s HAT was there. The charity offered clear, trustworthy information and personalised, compassionate support, reassuring Jenny and Simon that they did not have to face this journey alone.

Since then, the family has navigated the ongoing challenges that come with a hydrocephalus diagnosis. Every day, Jenny and Simon live with the constant fear that Jethro’s shunt could block or malfunction: a time-critical medical emergency. To date, Jethro has endured three brain surgeries.

Jenny and Simon regularly attend Harry’s HAT family connection events, which provide a relaxed, inclusive space, where children can play and parents can meet others who truly understand. These gatherings offer connection, shared experience and a community that brings comfort, strength and hope.

Jenny says:
“I am so grateful to Harry’s HAT for giving us the chance to meet families just like ours during times when we’ve felt alone and isolated, and for the wonderful opportunity to connect with families who understand the ups and downs of hydrocephalus.”

As first-time parents, Rebecca and her partner Alex had never heard of hydrocephalus, nor were they told how important it is to measure a baby’s head regularly.

Their son Sebastian, now two years old, was born prematurely. He was diagnosed with hydrocephalus at 11 months after a health visitor noticed his head was larger than expected and that he was delayed in reaching some of his milestones.

Seb is a wonderful, charming and smiley little boy, but his late diagnosis has had an impact on his development. Had routine head circumference measurements been taken consistently, his hydrocephalus would likely have been identified sooner, allowing for earlier diagnosis and treatment.

Rebecca and Alex are strong supporters of Harry’s HAT’s Get-A-Head campaign. They firmly believe that arming parents with the knowledge of why head measurements matter, could improve outcomes for babies like Seb in the future.

Bella is a proud big sister to James, who lives with hydrocephalus and complex needs. His care requirements, medical equipment and frequent appointments affect the whole family, yet Bella approaches every day with remarkable compassion. She helps with his feeds, keeps him entertained, and has a unique gift for making him smile, even during the toughest moments. Family outings can be challenging due to James’s high needs, and Bella often puts his wellbeing before her own, carrying the constant worry of shunt malfunctions and potential hospital admissions. 

As a Harry’s HAT young ambassador, Bella truly embodies being a “Superstar Sibling”. She is brave, kind and resilient. She not only receives support through the sibling project but also actively contributes to it, openly sharing her experiences to help other siblings understand their feelings and challenges. Harry’s HAT provides dedicated support for siblings like Bella, offering clear, age-appropriate information and creative activities such as crafts, quizzes and workshops. It offers much-needed opportunities for siblings to feel celebrated, valued and most importantly have fun!