Hydrocephalus awareness

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:

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.