Charity highlights worldwide disparities in baby health checks for brain condition

Research from a UK charity has shown the number of basic, routine checks on babies’ brains in the UK is falling far behind many other developed countries across the world, leading to concerns about potentially preventable late diagnoses of serious brain conditions.

Hampshire based Harry’s Hydrocephalus Awareness Trust (Harry’s HAT) is highlighting the issue through their GET-A-HEAD campaign, by lobbying the government to increase the routine monitoring of head circumference in babies.

Head measurement is described as a basic tool which can help to detect various serious brain conditions in infants – including hydrocephalus, more commonly known as ‘water on the brain’. The life-threatening condition is often characterised by an unusually large, or rapidly growing head.

In the UK, two measurements are taken in routine practise – the first at birth and the second at the 6-8 week GP check-up. That’s in comparison to Norway, where infants are routinely offered 11 head measurements across the first 12 months of life.

A Global Comparison

Harry’s HAT’s worldwide awareness day, known as ‘Global Get-A-Head Day’, is on 10th July, and now mums from across the globe are sharing their stories, to highlight how important head measurement was in the diagnosis of their child.

United States

Jeanann lives in Maryland in the United States. Her daughter has hydrocephalus, which was picked up by a routine head circumference check at 6 months old.

At the time, she was exhibiting no concerning symptoms, other than rapid head growth.

Jeanann said: “When the paediatrician was concerned by her head circumference at four months, I told them that everything was good – she was doing fantastic. So, they said they would look again at 6 months and depending upon what happens, will depend on how we move forward. But at 6 months, her head measurement went from the 50th percentile on the chart, to over the 95th percentile.

“Clearly her head was growing at a very fast rate compared to the rest of the measurements that they did. I was still in denial because she was hitting all her milestones, and everything seemed like it was going well. But they said they wanted to rule some things out. Luckily my insurance company paid for us to go to a paediatric facility to do the imaging – and that’s where the hydrocephalus was found, a week or two after her 6 month check-up.”

Jeanann’s daughter is now 19 years old and lives a full life, despite undergoing various brain surgeries over the years. But Jeanann’s doubtful she would have received an early diagnosis, with such a positive outcome, if she had lived in the UK where monitoring stops at 8 weeks old: “I get that you don’t want to give everyone a CT scan or an MRI, but to take a measurement until they’re a year old or until the soft spot firms up? I don’t understand why you wouldn’t do that – when I heard that the UK only does it those two times, it was shocking because I really don’t know where we would be if we had needed to wait until she was physically ill before we looked into treatment. I feel like it would never have gotten diagnosed in time for her to lead a pretty normal life.”

Malawi

Blessings Chapweteka works for Child Help SBH in Malawi. He has a background in nursing, palliative medicine and public health. He’s an advocate for the use of routine head measurement but says there is a long way to go before it’s adopted in his country: “In Malawi, it’s done at birth and then it’s not measured again. Head circumference measurement is not part of the paediatric routine assessment that is done beside weight and height. Even when you get the Under 5s Health Passport book, there’s a chart for height and weight but there’s no chart for head circumference measurement and that has been a big deterrent for routine head circumference measurement.

“We have been fighting with the government, advocating that they include the chart in the Under 5 Health Passport book. It’s a long battle that we’ve been fighting and last year we met the health minister – but it’s clear that it’s going to take longer before they accept it. The policy makers don’t understand these conditions and they don’t understand the importance of implementing these interventions.

“Because it’s not done routinely measured, we see children with very big heads, to the extent that, in Malawi, hydrocephalus is nicknamed ‘a child with a big head’. That is simply because we are detecting it very late because we’re not routinely measuring the heads.”

In 2015, Blessings spent some time working at a hospital in Norway, where routine head measurement is a regular and standard part of baby health checks in primary care.

He tells us the experience spurred him on to bring about change in Malawi: “My key interest was to see what happens with the diagnosis of hydrocephalus in Norway. I realised you rarely see children with big heads there. Norway, being a developed country and rich as they are, I thought would be using high-tech technology to achieve early detection, but I was very surprised. I realised that they were using routine infant head circumference measurement. They are very good at doing that, not at the tertiary level – at the primary level. Not when they think there’s a problem, but when they think all is well.

“When I returned to Malawi in 2015, we initiated an early identification project. We gathered data which we could present to policy makers, to show that routine head circumference measurement makes a difference. We met with the minister of health last year and we have learned that they understand the language of cost-benefit. So we need to gather data to show how early detection will be able to save the resources that they’re using.”

The Netherlands

Myrna’s son was born with hydrocephalus. His condition was detected in the 20-week anatomy scan and doctors predicted he would be severely disabled.

He is now 6 years old, is far exceeding the prognosis he was given and, aside from some challenges, lives life like any other boy his age.

Myrna said her pregnancy was an isolating time due to a lack of information and resources: “In the Netherlands, we couldn’t find anyone who was pregnant with a hydrocephalus baby who didn’t terminate the pregnancy - there was nothing.

“So when I was pregnant, I thought - if this baby lives - I’m going to write about it because people need to find this. There are other pregnant women in The Netherlands who get this diagnosis, and they need something. To this day, women still message me when they find the blogs, who are in the same situation. It’s so good to share this experience with them. When you find out something about your child you want to know everything.”

In The Netherlands, routine head measurement is part of standard practise and is carried out at child health clinics, known as Consultatiebureaus. Myrna added: When they’re babies they go quite often, they also do vaccines there and they measure the babies – so the weight, the height and the head circumference, I think, until one and a half years old.”

However, when it comes to awareness of hydrocephalus and the significance of head measurement, Myrna says there is still work to be done: “This is the big diagnostic tool for hydrocephalus after birth, and for babies who have hydrocephalus who need to be monitored. It’s really important to create more awareness because I think most people here don’t even know the term hydrocephalus. They don’t even know they have fluid in their own heads.”

Ethiopia

Ethiopia currently does not record any routine infant head measurements – not even at birth.

It’s something an organisation called ‘Neuro Kids’ is trying to tackle. The charity works across 16 countries, to train neurosurgeons and equip hospitals with the essential tools to optimize treatments for children living with hydrocephalus and spina bifida.

Meskerem is a clinical nurse and a holistic child development specialist who works for the charity – she’s among those championing the use of routine infant head measurement in the diagnosis of hydrocephalus in Ethiopia.

She said: “In Ethiopia the head measurement routine is not done in a very good way, especially if it’s a clinic which doesn’t see children already diagnosed with hydrocephalus and spina bifida, it’s not even in their clinical assessment, like any other vital signs.

“Nobody checks the baby’s head, even when they’re born, that’s why it’s very difficult to diagnose kids with hydrocephalus as early as possible – which is very treatable and effective. We’re working to make it a general thing, when the baby is born, when they have a vaccination or any time that they visit the clinic – be it a private or government hospital – we’re trying to make a trend to take a head circumference measurement.”

Germany

Katharina and Eddie live in Berlin, Germany, with their 8 month old daughter. Already, she’s been to five routine appointments, where head circumference was documented, along with weight and length.

The country offers six routine check-ups in the first year of life. Eddie said: “It’s not really explained what it is they’re looking for, but it’s just a standard thing that they do at the same time as height and weight.

“It is so quick and simple to take a head measurement - it goes without saying in Germany, so it’s a surprise to hear how it is in the UK.”

In Katharina's opinion, awareness of head measurement and what it can indicate is low in Germany, despite the system offering regular monitoring: "They are quite good at giving you a feeling of safety and that everything is covered and under control, but when it comes to having a tonne of different questions and wanting to have everything explained - the system is so stretched here and they just don't have a lot of time."

Kenya

Juliana Auma is the mother of a child who was born with spina bifida and hydrocephalus, she works for Child-Help International in Kenya.

Juliana tells us the country has made strides to improve routine infant head measurements, but still, it’s rarely recorded: “If you look at the Kenya Paediatric Association, they have made it mandatory to take a head measurement, but in practise it is not happening. It only happens if the child has any neurological condition that will trigger the need to monitor the head circumference, or in a private hospital. If you come to the usual hospital that many of the population in our country attend, regardless of whether they have hydrocephalus or not, it is not done.

“There’s a booklet that’s given to mothers when they’re pregnant and we have a very good chart which shows how we monitor weight, but there’s nothing to do with head circumference. It’s a wonderful tool to rely on and it’s only the Spinabifida and Hydrocephalus Association in our country which lobbies and advocates for it to be included in that booklet and also to enforce that this must be done.

“As much as we have all these gaps that we have identified, we continue to advocate and lobby because if we give up, we are giving up on our children. I know some day the policy makers will be able to appreciate that having this as a mandatory check will be cost effective when it comes to providing care for these children in the future.”

Canada

In Canada, routine head measurement is taken six times in the first year of life, as part of every well-baby visit.

Ashley lives in Ottawa in Canada. Her son was diagnosed with hydrocephalus in utero at 36 weeks, following an optional scan after what had been an otherwise ‘uneventful’ pregnancy.

The condition was caused by a brain bleed, which affected his vision and mobility centres, causing a blockage which led to hydrocephalus. He was fitted with a VP shunt; a treatment option which drains the excess fluid, to be absorbed elsewhere in the body.

“I’ll always remember that first scan when they talked about how profound his hydrocephalus was. To see the change once the shunt went in – I had goosebumps all over, just feeling so hopeful about how his future would look. He’s a wonderful boy.”

Now five years old, Ashley’s son is living a full life, far exceeding doctor’s initial predictions. He has no deficits and is a very active and chatty boy. Ashley added: “It’s pretty quick and easy to do a head measurement and early intervention for these kids is key before the pressure starts to build up even more. I would be disappointed knowing that there’s only two in the UK, especially if your kid is being seen more than that.

“Here, we have the paper tape measures, you can recycle them so it can’t even be that expensive. It’s a very easy test and catching it early, in my opinion, is key to helping these kids and families.

“It’s nice that it’s routinely monitored for us, but it’s not talked about why it’s being monitored, or at least it’s not a conversation that parents share among each other in the way you would with feeding. Nobody really talks about the head circumference.”

Uganda

Joshua Magombe Jayz works as a research assistant for NeuroKids in Uganda – the organisation aims to make life better for children with spina bifida and hydrocephalus.

He tells us routine infant head measurements are carried out if a child is already identified to have hydrocephalus, but not amongst the general population: “Outside a clinical setting, head growth monitoring among children is not a standard procedure for care. The diagnosis is always done at a later stage of the child’s life.”

Joshua was able to spend time working in Boston Children’s Hospital in the USA in 2013. It highlighted practises which would be idealistic to add into the routine care offered in Uganda, but he believes it may not be realistic with current budgets: “When I was in the U.S, I noticed that we have policy gaps back home in Uganda. We do have policies but when it comes to implementation, probably because of budgetary allocations or the cost involved of managing children with hydrocephalus, it makes it hard to replicate what is successfully done in Norway and the USA.”

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