29. Elisha

I met Leesh in first year uni. Despite sharing countless lunchtimes on the lawn between classes, summer music festivals and end of exam celebrations, I knew very little about her studies. Instead, I knew her as an intelligent  and articulate science student, a passionate jazz drummer and a die-hard lover of Elmo! When I saw Leesh’s face on the news recently explaining her work, I realised that fifteen years on, I still had little understanding of her research career. So, I invited her to feature on this blog. Catching up with Leesh, her hubby and their adorable daughter over a delicious lunch, I found myself in awe of her ability to juggle her family life with her unwavering commitment to supporting children born preterm, adolescents with chronic fatigue and their families 

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“Cerebellum literally means ‘little brain’. It’s a part of the brain that was traditionally thought to be solely involved in the control and coordination of motor behaviour – our movement, our balance and so on.

However, in the last couple of decades there’s been some controversy. Thinking has shifted and there’s evidence to suggest the cerebellum might be involved in cognition and emotional behaviour as well.

I love a bit of controversy in science!

As I was becoming more and more interested in the cerebellum, my grandma wound up in hospital after a series of falls. The doctors told us it was probably due to an alzheimer’s-type dementia. I had just started my Masters in Clinical Neuropsychology, and her behaviour didn’t fit with what I had been learning about dementia. I was confused – how could the doctors get it wrong?

I told Mum about the behavioural patterns I had noticed in my grandma that might suggest something was wrong with her cerebellum and Mum encouraged me to talk to the doctor. I was pretty embarrassed, but the following week the doctor thanked me for my detective work and said it had compelled him to arrange an MRI scan of my grandma’s brain – she was diagnosed with a (thankfully, benign) cerebellum tumour. I felt like I was in an episode of ‘House M.D.’ It also seemed like too much of a coincidence to ignore, so I decided the cerebellum would be the focus of my PhD.

Another close family member suffering an ischaemic stroke years earlier had initially driven my interest in the area of neuropsychology. I was 16 and I found it heartbreaking to see the impact the stroke had on such a fiercely intelligent and high-functioning person. It affected him physically, intellectually and emotionally. Being involved in his rehabilitation, I saw the care he received in hospital – sometimes he was treated really well and at other times he was ignored. He could no longer communicate his needs and wishes, and because he was older, I think some viewed his case as hopeless. I was appreciative of the staff who focused on what he could still do, rather than his loss of function, and who were happy to listen to the advice and thoughts of the family. It drove me to work in this area, and make a positive impact on patients with brain disorders and their families.  

During my research and clinical training, I was exposed to different fields of neuroscience, brain conditions and diseases. I worked on a variety of weird and wonderful projects, ranging from attaching electrodes to people’s heads to assess how ‘aware’ people are of their own mistakes, to spoken language tests on people before and after drinking vodka to assess the effect of alcohol on their speech.

But for my PhD, I specifically wanted to look at the cerebellum’s structural and functional development, and how injury early in life could impact on neuropsychological functioning later in life.

A research group at the Murdoch Children’s Research Institute at The Royal Children’s Hospital in Melbourne was already looking into the long-term outcomes for children and adolescents who had sustained early brain damage, or had been born prematurely – and I was lucky enough to join them.

Years ago, if a child was born extremely preterm, the chances of survival were not good. Advances in technology have largely improved those chances, but we’re still learning about the longer-term effects of their brain being exposed to an ex-utero world earlier than planned.

When children are born extremely premature, it can be a traumatic event for families. The shock of the early arrival, an often-complicated birth, a feeling of helplessness if the child is born incredibly sick or goes through multiple operations and surgeries. When their babies grow up, some parents become very concerned about what other problems their child may face in the future like speech, motor, or cognitive problems – research shows that these children might be at increased risk of developing medical, cognitive and psychological problems later in life.

I spent months looking at MRI scans and analysing the micro structure of the cerebellum of children who were born extremely preterm. I was ecstatic to find that there was a structure-function relationship – better memory function was related to more mature micro structure in the neural connections between the cerebellum and the rest of the brain.  

We still have a long way to go, but we hope this research will help us identify which children are at risk of developing memory problems. This would enable the provision of monitoring or early intervention programs as needed.  

After completing my PhD – actually, it was the day my daughter was born – I found out I had been awarded a big grant to conduct another project. It was a pretty incredible week – I had given life to the most exquisite little human and my research career had been given new life too!

In addition to my research into prematurity, I help coordinate a research program into adolescents with chronic fatigue syndrome, and the new project is looking into this clinical population. Fatigue is a big problem in many chronic illnesses and can have a devastating impact on people’s day-to-day lives – their thinking, mood, work, relationships and life plans.

Kids diagnosed with chronic fatigue syndrome often miss out on months and months of school and it can be hard to catch up. They may miss out on their exams, have to re-sit a grade, or study Year 12 over multiple years. If they’re absent from school, they may start to miss out on social engagement which is so important in adolescence. The fatigue and the pain may mean they are not able to partake in weekend sports or school music or drama.

It can become a slippery slope as their life starts to narrow and they may withdraw from the community.

This new project will help us track the course of symptoms of the illness and see if and how adolescents recover with time. We can also track the longer-term effects of the syndrome on their cognition, and see whether there are differences in their brain structure and functioning compared with healthy adolescents. This might help us diagnose the condition in the first place which would be a breakthrough as there is no definitive lab test or procedure to diagnose chronic fatigue syndrome.

While the research literature can give a good characterisation of an illness like chronic fatigue syndrome or being born premature or suffering from a brain injury, it can’t really tell you the lived experience of a patient or their family.

Having a clinical background while working in research has really helped me to empathise with families partaking in our projects. Rather than solely collecting data, I often find myself staying back after a research assessment to talk to the families about their experience – it is my favourite part of the job.

What amazes me is the incredible generosity of these families, donating their time to research. We get good recruitment rates for our studies because parents are so grateful that someone is actually doing this investigation. They’re generous because any information may be translated into clinical practice, perhaps not quickly enough for their own children to benefit, but it may help kids in ten years’ time.

They do a lot for us – children undergo MRI scans, long neuropsychological assessments, motor assessments, multiple questionnaires about their daily sleep and mood (for both adolescents and their parents). It’s a lot to donate – and we try to give back as much as we can.

The Murdoch Children’s Research Institute at the Royal Children’s Hospital is such an incredible place to work. I work with so many enthusiastic and passionate people. In particular, I work with a number of inspirational female leaders, emerging scientists, and working mothers, not to mention the incredible families who donate their time. And with its meerkat enclosure, adventure playground and giant interactive video screens, many children tell their parents they don’t want to go home at the end of their stay.

Along with my brilliant family and friends, these things inspire me to keep learning .”

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