Review into baby head measurement guidelines to start in the new year following charity campaign

An independent body which advises the government and the NHS on public health issues has announced plans to review the medical evidence on how frequently babies should have their heads measured in the first year of life, to help detect potential brain conditions sooner.

The UK National Screening Committee (UK NSC) is set to commission what’s known as an ‘evidence map’ in the new year, following proposals for a new screening programme put forward by Harry’s Hydrocephalus Awareness Trust (Harry’s HAT).

The small national charity, based in Hampshire, supports children with the condition and has been calling for change on the topic through its GET-A-HEAD campaign since 2021. They report increasing numbers of families raising concerns that their child’s hydrocephalus was picked up late, due to lack of head circumference monitoring in the UK.

What is Hydrocephalus?

Hydrocephalus is a condition characterised by an abnormal build-up of cerebrospinal fluid (CSF) within the brain’s ventricles. The accumulation can cause increased pressure inside the skull, potentially leading to brain damage if left untreated.

It affects around 1 in 770 babies in the UK and, in infants, one of the earliest signs of the condition can be a rapidly growing head circumference.

If diagnosed promptly, hydrocephalus can often be managed effectively with surgical intervention; such as the insertion of a device called a shunt to drain excess fluid to another part of the body.

How often are babies’ heads measured in the UK?

Currently, hydrocephalus is not part of the UK’s newborn screening programme, although head measurements are generally taken at birth and the 6-8 week check, when routine monitoring stops.

This falls far short of the number of measurements taken in other developed countries across the world, such as Finland and Norway, which record 10 and 11 measurements respectively, up until a child’s first birthday.

The process involves wrapping a paper tape measure around a baby's head for a few moments, before plotting the result in a baby's Red Book. The measurement should generally plot along the same percentile line on the growth chart graph, but a sudden jump in measurement can be an indicator of something that would need a potential follow-up with a specialist.

Natalie is a mum from Burnley, in Lancashire, whose son George was diagnosed with hydrocephalus at nine months old: “When he was born, his head measured on the 35th centile but 6 weeks later it was measuring on the 91st centile. Unfortunately that was missed.

"We got to around seven months old and he still wasn't sitting or rolling and by eight months old I had started to get concerned. I took him to see some health visitors and I was really reassured because they told me he was absolutely fine, boys are lazier than girls and there was nothing to worry about.

"Three days later, George got conjunctivitis so we took him to the GP for some eye drops. At that point, the doctor measured his head because she had noticed it was a bit big. She plotted the measurement on a graph and it was off the scale."

George was urgently referred to a specialist but had to wait four weeks for an appointment, and a further two weeks for an MRI scan.

Natalie continued: "Within 20 minutes of that MRI scan being done, we were taken by ambulance to Royal Manchester Children's Hospital and told that George needed emergency brain surgery, because the whole of the top of his head was fluid."

Natalie is now backing the review by the NSC to ensure other families don't endure the same delays they did: "You get your Red Book, with a height chart and a weight chart, but there's a third chart in there which is for head measurement. Nobody talks about that, nobody knows what that's for and it's not spoken about.

"As a mum, had I know that it was something I should look at - when his head measurement had jumped at six weeks old, I would have raised that as an issue and I would have followed that up. But I didn't know so it meant that from six weeks old to nine months old; nothing was done.

"Had more regular measurements taken place, the reality is that George's condition would have been picked up far sooner."

George is now 20 months old and is a happy and smiley baby, after being implanted with a shunt to manage his condition. However, he suffers with the ongoing consequences of his late diagnosis; He's still unable to crawl or walk and wears hats sized for 7-10 year olds.

As well as hydrocephalus, head measurements can help to diagnose a number of other potential issues involving the brain and skull.

What does this update mean?

The UK NSC’s decision to investigate the evidence base marks a significant step toward potential changes in infant head circumference monitoring. The evidence mapping exercise will look at the existing research and clinical data to determine whether there is sufficient justification to commission a full review of screening practices.

A spokesperson for the UK NSC stated: “We plan to commission an evidence map to investigate this topic. The output from this exercise will inform the next UK NSC decision on whether there is enough evidence to commission further review work. We expect this work to start next year and will update stakeholders once complete.”

The GET-A-HEAD campaign

Launched in 2021, the GET-A-HEAD campaign was initially started by Harry’s HAT to raise awareness amongst new parents about hydrocephalus and the importance of head measurements for babies.

The charity now hopes to eradicate late diagnosis of the condition by calling for improvements to the number of routine measurements babies receive in their first year.

The Trust has met with Health Secretary Wes Streeting MP, representatives from NICE and the Royal College of Paediatrics and Child Health, amongst many others, to get the topic on the agenda of both political and medical leaders.

Caroline Coates is CEO of Harry's HAT, a charity she founded alongside her husband Matt in 2018, following their own son's diagnosis of hydrocephalus: "I'm delighted that the NSC is now reviewing our proposal. This means hydrocephalus and the importance of early diagnosis will be discussed at the highest level.

"We hope the decision makers will consider the harm of not making changes and, from this, we hope that babies in the future won't have to suffer the consequences of late diagnosis."

What happens next?

While the evidence map is not a guarantee of future screening implementation, it represents a critical first step in the UK NSC’s rigorous evaluation process. The committee typically reviews screening proposals every two years, assessing them against criteria including the condition’s prevalence, the accuracy of available tests, and the potential benefits of early detection.

The results of this preliminary review should be made available in early 2026.

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