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UK charity calls on healthcare providers to help raise awareness of ‘lifesaving’ baby head measurement

Harry's HAT launched the nationwide GET-A-HEAD Campaign so babies born with hydrocephalus don't "slip through the net".

Emily Sergeant - 10th March 2023

A hydrocephalus awareness charity is calling on all UK healthcare providers to help raise awareness of “lifesaving” baby head measurement.

Harry’s Hydrocephalus Awareness Trust (Harry’s HAT) is an organisation that was set up to raise awareness of paediatric hydrocephalus – an incurable, and sadly life-threatening condition that affects one in every 770 babies.

Hydrocephalus is a build-up of excess fluid in the brain, which can put pressure on it to such an extent that it causes damage, and – if left untreated – can be fatal.

Harry’s HAT was set up in 2018 by founder and CEO, Caroline Coates, whose son Harry was first diagnosed with an arachnoid cyst when she was 36-weeks pregnant, that was later confirmed after he was born to have caused hydrocephalus.

Harry’s family were then told he would need a permanent shunt to drain the fluid from his brain at just eight weeks old if he was to survive.

By the time Harry had reached his first birthday, the youngster had already endured four brain surgeries, and had spent lots of time in hospital, with frequent blue light trips into A&E – while his family found themselves isolated by their lack of knowledge on the condition, and often struggled to access the support and information they needed.

That’s why Caroline founded Harry’s HAT.

Harry’s HAT is the only UK charity to focus solely on hydrocephalus and its impact, and the organisation works to make life better for children with hydrocephalus, as well as for those who love and care for them, all year round.

The organisation’s latest campaign, however, may be one of its most crucial yet.

The GET-A-HEAD Campaign is working to spread awareness and highlight the importance of the need for trained health care professionals to measure and record a baby’s head circumference in the first year of life, as this is one of the ways hydrocephalus can be diagnosed.

Hoping to reach expectant and new parents across the UK, the campaign’s mission is to show why these measurements can be a crucial tool for spotting life-threatening conditions such as hydrocephalus, so that little ones showing signs of the condition will no longer be able to slip through the net.

The campaign was set up after a recent survey by pregnancy and parenting advice forum, Bounty, discovered that only 20% of new parents were aware that measuring a baby’s head can help identify hydrocephalus, and almost half (45%) didn’t know that their baby’s head should even be measured at birth.

Harry’s HAT says “this needs to change”, as research suggests that early diagnosis can help improve the outcome for a baby born with hydrocephalus.

“While there is no cure for the condition, there is treatment,” the charity urges.

Speaking on why the campaign means so much to her, and why it’s so crucial, Caroline Coates – founder and CEO of Harry’s HAT – said: “Harry is my fourth child and I have spent most of my working life working for social care charities, yet even I didn’t know why they measured a baby’s head. I just thought it was something health professionals did and I never considered that it could reveal a life-threatening condition.”

“Far too many babies are still slipping through the net, and all too often we hear from parents who tell us that chances to spot their child’s hydrocephalus were missed.”

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You can support the GET-A-HEAD Campaign and find out more about the work Harry’s HAT does on the charity’s website here.

Featured Image – Harry’s HAT