Harry's Hydrocephalus Awareness Trust (known as Harry's HAT) is a user‑led charity that was formed in 2019 by the parents of a little boy (called Harry) with paediatric hydrocephalus. We are experts by experience who live and breathe the impact of paediatric hydrocephalus daily. Our mission is to make life better for children and families affected by paediatric hydrocephalus.
Hydrocephalus, previously known as ‘water on the brain’, is a potentially life‑threatening condition that affects approximately 1 in 770 babies each year (Hydrocephalus Association, 2023).
Hydrocephalus is characterised by an abnormal build‑up of cerebrospinal fluid in the ventricles (cavities) of the brain. The excess fluid causes the ventricles to expand, putting pressure on the brain. Without treatment, the increased pressure can affect development and, in severe cases, lead to permanent brain damage.
At Harry's HAT, we work to:
- Raise awareness of paediatric hydrocephalus
- Provide support to front‑line workers so that they can improve their knowledge and consequently enhance patient care
- Connect families affected by paediatric hydrocephalus to reduce isolation and build resilience
- Campaign for early diagnosis.
The #Get-A-Head campaign
As a user‑led charity, families feel confident to talk to us. We found that families were frequently contacting us to say that their child's head was never measured and/or that they had no idea of the importance of infant head circumference measurement. Parents consequently felt that opportunities to spot their child's hydrocephalus at an earlier point had been missed.
To learn more, we commissioned a survey with ‘Bounty’ of over 750 new parents who had babies aged 0–12 months (Harry's HAT, 2022a). We found that only 20% of parents were aware that measuring a baby's head could help to identify hydrocephalus. Almost half (45%) of parents did not know that their baby's head should be measured around 24 hours after birth.
In response, we launched our Get‑A‑Head campaign in 2022 (Harry's HAT, 2022b). It was originally focused on raising awareness of the importance of head circumference measurements in a child's first year, including when and why these measurements are taken. Importantly, it also aims to educate parents on what the results mean: a rapidly growing head, with or without macrocephaly, can be an indicator of a health issue that requires further investigation.
The campaign is now going further with its ambition to revolutionise healthcare for all babies, by asking for improvements in three areas, referred to as the three Cs: contact, communication and concern.
Contact
The first C, contact, aims to ensure that parents have a minimum number of face‑to‑face contacts with health professionals who are trained to measure head circumference and interpret the result in the first year of a child's life. This has recently been adopted in Scotland, where health visiting teams are now committed to eight visits with a family in the first 12 months (Scottish Government, 2015).
Communication
Midwives, GPs, health visitors and other healthcare professionals should explain when and why they perform each one of their checks, including head circumference measurements.
Concern
The campaign is calling for a review of the current National Institute for Health and Care Excellence guidelines (2021; 2023) that outline when head circumference should be measured, and when a referral for further investigations or a specialist review is warranted.
Open letter and petition
Our research has shown that not only are babies missing out on vital head circumference measurements across the UK, but that Britain falls far behind many other high‑income countries when it comes to the number of routine head circumference measurements offered during infancy (Harry's Hat, 2024a). As a result of our work, a neurosurgeon from every paediatric neurosurgical centre across the UK has signed our open letter to the heath secretary calling for a review of the current guidelines on routine head circumference monitoring during infancy (Harry's HAT, 2024b) and our public petition has also amassed over 23 500 signatures.
We are passionate about calling for change and recently met with the Health Secretary, Wes Streeting, and the Speaker of the House, Sir Lindsay Hoyle MP, to discuss this.
Supporting families
On a wider level, Harry's HAT provides support to families of those affected by paediatric hydrocephalus, which includes connecting families living locally and whose situation is similar. We know from personal experience just how isolating the condition can be and meeting others on the same journey can be life changing.
Writing as Harry's mum, I know the condition can be scary, so the charity wrote two books for families in the same position, with the help of families themselves:
- Hydrocephalus: what I wish I'd known
- Hydrocephalus: starting school.
We have a wide range of resources on our website (Harry's HAT, 2020), which are free to download, and we deliver awareness raising workshops to groups of healthcare professionals, where lived experience is shared among those in the audience.
As a very small charity, it goes without saying that we are always fundraising to raise money to enable us to continue our work. After reading this article, we would ask you to please consider sharing our website and social media handles in the hope of raising awareness and driving up funds.