GET-A-HEAD: Leading neurosurgeon says baby head circumference must be given same focus as weight

Together with Harry's Hydrocephalus Awareness Trust, we're calling for improved guidelines for baby health care across England which would standardise the support available to families, regardless of their post code.

Baby having head measured
Author: Victoria GloverPublished 3rd Mar 2023

A leading child neurosurgeon is recommending that GPs and Health Visitors are given more training in the importance of monitoring head circumference, to help identify life threatening medical conditions in babies.

Jay Jayamohan is a Consultant Paediatric Neurosurgeon at the Oxford Children's Hospital. He's backing the GET-A-HEAD campaign, which we've launched alongside Harry's Hydrocephalus Awareness Trust.

We're calling for improved guidelines for baby health care across England which would standardise the support available to families, regardless of their post code.

Our research has found a disparity across the country when it comes to measuring baby head size, with some NHS Trusts committing to a measurement on every contact with families, but others failing to record the measurement at all. A rapidly growing or unusually large head in an infant can indicate a life threatening condition called hydrocephalus, which is also known as water on the brain. It's a life-long condition which requires urgent surgical treatment for the best possible outcomes.

The guidelines we're calling for with Harry's HAT include more contact with health professionals in a baby's first year, with teams who are trained to take and interpret head circumference measurements, and for better communication with parents about why these routine checks are performed.

Mr Jayamohan told us recording head size is a basic way to help identify this group of children who need surgical intervention, with minimal cost: "What’s being asked for is not a complex or expensive intervention. It is a tape measure and a baby's head and it takes minimal time to do. This is so low rent that any argument about low yield is null and void. It doesn't matter if you only pick up 1 in 1,000 babies, you do it because it is basically free.

"It needs to be acknowledged that head circumference measurement is frequently not filled in by health visitors in the red book at the 6-8 week check. It's almost as though it's been decided that this is the least important measurement. Why is it not filled in? What has happened in the education of the community practitioners for them to be told that this is not as important as weight? It doesn't make sense and it needs to be addressed."

Mr Jayamohan says the same focus should be placed on head circumference measurement as is placed on monitoring a baby's weight gain: "It's all about education, because people will do what they understand to be the most important surveillance. So, if we teach GPs and Health Visitors again about why this is important, what this can lead to and what may be avoidable if conditions are picked up early, then we should be able to get them back on board because head circumference used to be a regular part of the assessment, and it should be again."

He says the difference between early and late diagnosis of hydrocephalus can be stark when it comes to the child's opportunities later in life: "We want to move away from needing to perform lifesaving surgery that needs doing tonight or tomorrow, and now we're thinking if a baby is treated at 6 weeks old rather than 6 months old we're giving our children the maximum opportunity for a fulfilling life with as many options open to them as possible.

"From a community point of view, the whole point of surveillance rather than treatment is to pick up conditions early before the child has problems, and treat to avoid them having problems. Rather than treating their problems. You can always get physiotherapy and rehabilitation for a child if they have difficulties, but isn't it much nicer to do a treatment and not need any of that?

"We should also be arming parents with the knowledge about its importance in the antenatal support groups. If your health visitor doesn't measure the head - ask them to do it."

Harry's HAT initially started the GET-A-HEAD campaign in 2022 to raise awareness among parents of the need for trained health care professionals to measure and record a baby’s head circumference in the first year of life. The campaign's key focus has always been to stop babies showing signs of hydrocephalus from slipping through the net, leading to late diagnosis.

Matt Coates is one of the founders and treasurers of the charity, which is named after his son: "Harry is my first biological child, although I am proud step dad to our three older children. When my wife was pregnant with Harry, I bought all the books and I read them from cover to cover. Not once do I remember reading about the importance of head circumference measurement and it was never covered in the parenting classes that I dragged Caz along to.

"I understood why you should weigh the baby and measure the length of the baby, but as ironic as it now sounds; I never considered the 'why' for head measurement. To me it was just something you did, and not something which could reveal a condition that could potentially kill my child."

You can see more about the signs and symptoms of hydrocephalus here.

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