Nicky Beatson and her 5-year-old son Kaden Brown, who developed hydrocephalus after a brain-bleed injury at birth. Photo / Sylvie Whinray
In another world-first, a miniature pressure sensor has been successfully implanted into the brain of a child with hydrocephalus in New Zealand – a game-changing medical breakthrough for people living with a time bomb inside their heads.
There’s an invisible line that cuts across the corridor to the paediatric intensive care unit at Auckland’s Starship Hospital.
The closer Nicky Beatson gets to it, she’s gripped by such an overwhelming sense of panic that all she wants to do is turn around and run.
“There’s a certain point in the hospital where the emotions take over and it’s a real battle to move past it,” she says.
“On the other side of that wall is where we were told to prepare for the worst kind of thing, to potentially say our goodbyes. You’re reliving that moment every time.”
Within 24 hours of her son’s birth, he was rushed into emergency surgery for a catastrophic brain bleed, a rare complication of his ventouse delivery.
During the long hours in which Beatson and her partner, Graham Brown, were left waiting to hear if he’d pulled through, they decided to call him Kaden, which means “fighter” or “battler” – and he’s lived up to his name.
“There was a strong possibility there’d be developmental delays,” she says. “They weren’t sure if he’d be able to walk or talk. It was a really big unknown at that point. He’s defied all the odds, that’s for sure.”
In April, Kaden Brown turns 6. A precious only child conceived via IVF, he’s an active, affectionate boy who’s doing well at school – but his parents are still living with the knowledge there’s a potential time bomb in their son’s brain.
When Beatson first heard the word “hydrocephalus”, she had to Google what it meant.
After recovering from multiple surgeries, Kaden had only been home from hospital for a couple of days when he suddenly deteriorated. At 9 weeks old, he was back on the operating table.
An estimate of between one and two babies out of every 1000 birthed are born with hydrocephalus, a neurological disorder that leads to a dangerous build-up of cerebrospinal fluid deep within the brain.
While more common in children, the life-long condition isn’t always congenital but can be caused by a tumour, an infection, or an injury that causes bleeding in the brain, such as a car accident or stroke.
Kaden was desperately unlucky: the odds of developing hydrocephalus from a suction delivery are vanishingly small.
To relieve the pressure on his brain, which can cause permanent damage, a silicon shunt was surgically inserted through a hole in his skull to drain the excess fluid.
Beatson can still feel the fine tubing that runs under the surface of Kaden’s skin, looping around the back of one ear and emptying harmlessly into his abdomen.
In use since the late 1950s, these shunts remain the standard treatment for hydrocephalus and have proved remarkably effective, allowing people to have a normal life.
However, they also have the highest failure rate of any medical device. In children, around 40% of shunts malfunction in the first year. By the end of the second year, half will have become clogged or infected, requiring urgent surgery to replace them.
For parents like Beatson, that means living on a knife-edge. A blocked shunt can become life-threatening within 24 hours.
An emergency plan has been put in place at Kaden’s school and with people involved in his care, but the symptoms of a failing shunt – headaches, lethargy, irritability, nausea – are frustratingly vague, especially in children.
Twice he’s been rushed to the emergency department, only to discover it was a false alarm.
That’s been extremely distressing for Beatson, who was diagnosed with PTSD after the trauma of nearly losing Kaden in those first few weeks of his life and has an autoimmune condition likely triggered by stress.
Kaden, who’s subjected to a battery of tests each time he’s admitted, now has a fear of doctors and hospitals, too.
“If something is wrong with the shunt, he needs to be seen as fast as possible, and potentially he’ll be in the operating theatre pretty quickly,” says Beatson.
“We have to be on alert but the signs are so vague. You’re left trusting your gut, which is scary, and you get to the point where you’re debating whether or not to go.”
If what kids like Kaden need is a magic wand to see what’s going on inside their heads, Auckland scientist Simon Malpas is their fairy godmother.
A professor of physiology and bioengineering at the University of Auckland, Malpas and his team at medtech start-up Kitea Health have designed a glass-encased micro implant, slightly smaller than a Panadol tablet, that can be placed in the brain to act as an early warning system when a shunt is failing.
The wireless sensor, which measures fluid pressure, is activated by a hand-held wand and sends data to a mobile phone app. The encrypted results can also be shared with the person’s medical team via a clinical portal in the cloud.
Since mid-2024, Kitea Health has placed sensors in seven adults with hydrocephalus – the first time a fully untethered microcomputer has been implanted into the human brain.
After an independent review late last year, the green light was given to begin trialling the sensor in children. Details are being kept confidential, but the first operation has now been carried out successfully.
It’s a breakthrough moment for Malpas, the co-founder and chief executive of Kitea Health, which has raised $7 million in its first round of investment capital to develop the device commercially.
“I’m pleased to say that the system is working as it’s meant to and the feedback from patients, surgeons and the clinical team has been only positive at this stage,” he says.
“The data that we’re seeing and providing to the clinical team is really thought-provoking because it is the very first time that anyone has ever measured brain pressure at home.”
Up to 10 adults and 10 children with hydrocephalus will be enrolled in this early feasibility study, for which the sensor is implanted when a patient presents at hospital needing a shunt inserted or replaced – adding just five minutes to the surgery time.
Each person is closely monitored for three months and asked to record their symptoms and mood in the app to help identify any trends.
It’s hoped a larger international trial, involving 150 patients in New Zealand and the US, will begin early next year.
While hydrocephalus is being targeted initially to “road test” the sensors, the technology has far-reaching potential.
Future applications could include red-flag monitoring for heart failure, where one of the warning signs is a build-up of pressure in the pulmonary artery. The company is in a pre-clinical testing phase for that now.
Malpas began developing the original concept more than a decade ago, after a paediatric neurosurgeon told him he saw hydrocephalus patients with suspected shunt failures every day.
“He said, ‘Can’t you design a better shunt?’ We looked at it, and hundreds of millions of dollars in research investment have gone into that without success. What we can do is pressure monitoring.”
About 100 people in New Zealand are diagnosed with hydrocephalus each year, including some unexplained cases that spontaneously occur in women in their 20s and 30s.
Most can expect a normal life expectancy. However, within the first two years of a shunt being inserted, there’s an almost 100% chance it will either malfunction or there’ll be at least one false alarm.
Malpas has met one woman in her 20s who’s had 100 shunt surgeries. At the other end of the scale, the first adult on the trial to have a sensor implanted was receiving his first replacement shunt at the age of 17.
Families have told Malpas it’s like knowing a train crash is going to happen but having no idea when.
“People come into hospital not knowing [whether] they’re about to suffer serious brain damage or it’s just a bad headache,” he says.
“There’s a degree of urgency around it because they can deteriorate over hours. For parents, the anxiety level is horrendous.”
Sarah-Jane Guild, pre-clinical and clinical lead at Kitea Health, says children are more prone to shunt blockages but can’t necessarily articulate how they’re feeling.
One woman said the only way she knew her young daughter’s pressure had escalated was by the high-pitched nature of her screaming. “That’s just terrible, to try [to] base anything on the pitch of your child’s scream,” Guild says.
“If someone is what we call ‘fully reliant’ on a shunt, it monopolises their whole lives. It determines where they live. It determines if they can go away, because [a problem] can happen at any moment.
“It’s one thing if you live in Auckland and you’re 20 minutes from Starship or Auckland City Hospital, where there’s a neurosurgical team. If you’re up in Kaitāia or live rurally, it’s a big call.
“Do you rush them to a clinic to be assessed if they’re tired and irritable? Or do you give them paracetamol, put them to bed and hope it’s fixed by a good night’s sleep?”
About $15m of grants and public funding has gone into start-up research and development so far (”kitea” is a Māori word meaning to detect, notice or observe). In the longer term, another $30m investment will be required.
Auckland-based venture capital firm Pacific Channel and Icehouse Ventures (an arm of Cure Kids) are leading the next round. Kitea Health has also gone live on the Snowball Effect platform, where the minimum investment is $5000.
Production costs are commercially sensitive but when a figure of around $10,000 per device is put to Malpas, he concedes that’s “not unreasonable”.
A detailed cost-benefit analysis will be needed to show whether using the sensors would save the public health system money by avoiding unnecessary hospital admissions, neurological consultations, CT or MRI scans, and unneeded surgery – as well as the less tangible cost of emotional and psychological stress.
The extended trial planned for next year will aim to produce data showing clinical benefit on a population basis, required to gain regulatory approval for it to be classed as a medical device in the US.
While hydrocephalus is reasonably uncommon, there are a million people living with the condition in the US alone.
In New Zealand, Malpas says, the number of people who could benefit from the sensor technology would be similar to the number who receive cochlear implants.
“Cochlear, the company in Australia [that produces implantable hearing devices], is an $18 billion market capitalisation on that technology, so it’s sizeable worldwide. We want to be New Zealand’s answer to that.”
Kitea Health operates out of the Auckland Bioengineering Institute, where Malpas previously led the Implantable Devices Group.
He believes medical devices that allow remote monitoring will create a new paradigm, enabling people with chronic health conditions to proactively manage their own care.
For parents like Nicky Beatson and Graham Brown, being able to make an informed decision about whether to take their child to hospital would significantly reduce the anxiety they live with on a daily basis.
Beatson’s parents have donated generously to the project, and when Kaden was 3, the family visited Kitea Health and were shown an early sensor prototype.
“I know other parents who have kids with shunts and have been in and out of hospital multiple times,” says Beatson, who has a flower tattoo winding around the back of her ear that mirrors the path of her son’s shunt.
“Kaden does get tired and he has a bit of trouble concentrating, but you get fatigue from any brain injury and, you know, what’s a typical boy?
“That’s the hard thing, the unknown. It’s like a black hole. So this would be one [fewer] massive thing to worry about.”
Joanna Wane is an award-winning feature writer on the NZ Herald’s Lifestyle Premium team, with a special focus on social issues and the arts.
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