2nd June 2025
We are delighted to share this Voices Blog by Caroline Coates, the founder of Harry’s Hydrocephalus Awareness Trust, known as Harry’s Hat. Caroline shares her personal experiences and the charity’s mission to increase awareness of hydrocephalus, champion better treatment, and campaign for improved detection.
Harry’s Hydrocephalus Awareness Trust
My name is Caroline. I am the founder of the user-led national charity, Harry’s Hydrocephalus Awareness Trust, known as Harry’s Hat. I am Mum to four wonderful children of whom one is Harry who was born with paediatric hydrocephalus. Harry is one the of the 1 in every 770 babies born each year who are either born with, or will develop hydrocephalus. Harry’s Hat was set up to support children and families living with paediatric hydrocephalus. Our mission is to increase awareness, champion better treatment and campaign for improved detection.
Hydrocephalus is an abnormal build-up of cerebrospinal fluid (CSF) within the fluid-filled spaces (or ventricles) in the brain. Hydrocephalus can either be congenital (present from birth) or acquired, e.g., the result of injury or illness. The excess fluid puts pressure on the brain which can damage it. If left untreated, hydrocephalus can be fatal. In most cases, the treatment for hydrocephalus is the placement of a device called a shunt.
We founded the charity after healthcare professionals highlighted the lack of training opportunities to further their understanding of the condition and to also address the isolation that we endured after Harry’s diagnosis.
The charity has grown, quickly. Last year we supported 578 families directly and provided information and contact to over 3000 people, which includes healthcare professionals. We have written two books aimed at helping families navigate their child’s hydrocephalus journey and the charity now delivers a Families Together Programme and Sibling Programme. We have also produced 35 bespoke resources to help families navigate their journey. Each one developed in response to a highlighted need.
Despite the many challenges and bumps along the way – shunt blockages requiring further brain surgery and lots of time in hospital – I still count myself as lucky. Harry’s hydrocephalus was picked up early, consequently he was treated early and lives a full and (very!) active life.
Sadly, we discovered that this was not the case for many, many families. Soon after the charity’s launch, families from across the country started contacting us to say opportunities to spot their child’s hydrocephalus had been missed.
Get-A-Head – the importance of head circumference measurements
A key way of identifying babies showing signs of hydrocephalus is through regular head circumference measurement, which is carried out using a paper tape measure.
We heard from families who, despite the mandatory guidance to provide two measurements in a baby’s first year of life, didn’t even receive these. We also learnt that many families felt guilty because they didn’t know the significance of the head circumference measurements. Had they known, then they would have felt more confident to ask.
Our survey of 750 new parents explored parental experiences and knowledge of head circumference monitoring and hydrocephalus awareness. Worryingly, around half of parents did not know when head circumference should be measured, and over 75% were not told why it was measured. However, there was overwhelming support for routine head circumference monitoring, with 94% of parents agreeing it should be continued until a child is a year old.
We knew something had to be done, so we launched the Get-A-Head campaign in 2022.
The Get-A-Head campaign calls for the three Cs:
- CONTACT: 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.
- COMMUNICATION: Midwives, GPs, Health Visitors etc., to briefly explain why they perform each one of their checks. For example, does the parent know why head circumference measurement is important and do they know when to expect this measurement to be taken again?
- CONCERN: A review of the current national guidelines, which discuss when and how a health professional should refer a child with concerning symptoms to a specialist team, regardless of postcode.
Contact – improving early detection of hydrocephalus: Our research shows that the UK falls far behind many other high-income countries when it comes to routine head circumference monitoring during infancy. For example, a baby born in England will receive 2 routine head circumference measurements in the first 12 months of life – around the time of birth, and at the 6-8-week check. Routine monitoring stops at 8 weeks of age.
A rapidly growing head is usually the first (and sometimes the only) sign of hydrocephalus in infants1. We also know that, for most babies with hydrocephalus, the average age at onset of rapid head growth is 4.8 months1. So why are we stopping routine head circumference measurement at eight weeks?
In Finland and Norway, a baby will receive 10 and 11 measurements during the first year of life, respectively. The American Academy of Paediatrics currently recommends 8 measurements through to 12 months. View more global comparisons here.
To me, ‘communication’ is where Health Visitors come in. I really hope that everyone reading this agrees with the need to measure a baby’s head. But ponder for a moment. Are you telling parents why you are doing it and its significance? I passionately believe no check, however minor, should be undertaken on a baby without clearly informing the parents of the why.
Health Visitors play a key role in the diagnostic process:
“it was my amazing health visitor who measured his head and urgently referred me to the hospital. I had seen my GP earlier in the day who had told me nothing was wrong. Fortunately, she listened to me and took the time to measure.”
For me, however, it was the care after Harry was diagnosed that made all the difference. Bex was my health visitor, and she will always have a special place in my heart. She came round in those terrifying early days. Home from hospital with a baby with a life-threatening brain condition and three other young children, she made me feel less alone. She drummed into me that as Harry’s Mum, I was his voice. If I didn’t think Harry was right, then I was most likely right! This proved lifesaving on the day I drove him to hospital thinking ‘there’s something wrong with his shunt’. When we got there, he started playing with his toys. I spoke to the nurses who looked at him and reassured me, but I persisted – he’s just not right! Turns out his shunt had dislodged and was no longer working properly. Bex in my ear telling me I know him best was what kept my feet stubbornly grounded and my voice strong.
Matt, Harry and Caroline
Focusing now on ‘concern’, we have made significant strides. We sent an open letter, signed by paediatric neurosurgeons representing every Paediatric Neurosurgical Centre in the UK, to the Secretary of State for Health and Social Care, The Rt Hon Wes Streeting MP. Our letter called for a review of the evidence underpinning the current national guidance. In November, we met Wes Streeting MP, and he agreed to seek advice about an evidence review. In March this year, we were invited by the Speaker of the House, The Rt Hon Sir Lyndsay Hoyle MP, to host an event in the Speaker’s House State Rooms to highlight the work and progress of the campaign. The event brought people from all sides of the political divide together, as well as families, charities and policy makers to learn more and, most importantly, meet those who are directly affected.
Coincidentally, as I am sitting here writing this Blog, my email pings. It’s Wes! “thanking Harry’s Hat wholeheartedly for raising the profile of hydrocephalus amongst society. Your own personal devotion to this cause is also highly admirable”. However, his letter defers us back to NICE to submit routine infant head circumference measurement as a topic for a prioritisation review. I must say it feels like we are going around the houses – but the issue is too important to let slide, so of course we will.
We will keep going and you can help too.
- Our petition calling for change has secured over 25,270 signatures. There is still time to add yours! Sign our petition here.
- On 10 July, we host Global Get-A-Head day highlighting the importance of the humble tape measure for protecting babies’ brains. You can get involved by visiting the page and sharing why head circumference measurement matters. Afterall, time is brain and the quicker we diagnose babies with brain conditions, the better their chances, and to me that is worth fighting for!
Source:
[1] Zahl SM, Wester K. Routine measurement of head circumference as a tool for detecting intracranial expansion in infants: what is the gain? A nationwide survey. Pediatrics. Mar 2008;121(3):e416-20. doi:10.1542/peds.2007-1598
