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In Hope Stories

Just 1% of the national research spend has been allocated to this devastating disease

Oscar Crane Rawlinson

Oscar Crane Rawlinson was diagnosed with a low-grade choroid plexus papilloma and hydrocephalus at just eight months old in April 2018. His head was swollen, his eyes were bulging and he had become very angry. He has since undergone 11 brain surgeries and has been left with permanent brain damage. The five-year-old, from Lowestoft in Suffolk, is autistic, has global developmental delay and suffers from decreased muscle tone known as hypotonia. 

Here is Oscar’s story, as told by his mum Tessa … 

My son Oscar had a dramatic start to life, being born six weeks early by caesarean section, but he was generally a happy baby and had been reaching all of his developmental milestones. Sadly, things changed very quickly when he was about seven months old. He became irritable and would cry non-stop. His head was swollen, his eyes were bulging and he was vomiting. 

“I took him to the doctor 18 times in one month but was told I was a nervous first-time mum and given medication for anxiety.”

I knew that newborn babies could be challenging as I had managed a nursery previously and had worked with lots of children, but I knew this was something else. Oscar’s symptoms had been attributed to my poor mental health, a viral infection and colic; I was in bits. My friend visited the morning after I’d been for yet another doctor’s appointment. She was the only person to really listen to me, so I asked her to accompany me to A&E. I figured either Oscar really didn’t like me and I was doing something very wrong, or there was some medical explanation which would be found.

Within 30 minutes of being at the James Paget University Hospital (JPUH) in Norfolk, my worst fears were confirmed. Oscar was sent for an MRI scan and then we blue-lighted straight to Addenbrooke’s Hospital, in Cambridge. He had hydrocephalus, fluid on the brain, and needed emergency surgery. I was quickly pulled into a room and told that he also had a brain tumour. I couldn’t believe it. 

“Knowing he had fluid on the brain was scary enough, but learning he had a tumour was terrifying.”

Oscar’s first surgery, in April 2018, lasted 12 hours and saw his tumour, a grade 2 choroid plexus papilloma, fully removed. It was located in the centre of his brain, across all four ventricles, so he had four large pockets of cerebrospinal fluid (CSF), as well as more outside in the subdural space. This was expected to return to normal after the surgery, but it continued building up. 

“In the end, he had a total of 11 brain surgeries, all different drain systems and all in the space of four months.”

The shunt he had fitted initially only drained the subdural fluid and not the fluid in his ventricles, so he had to have another valve added in the form of a duo shunt. Unfortunately, by the time it was implanted, Oscar’s infection markers were higher than they should have been, which came back to bite him. 

He was discharged after two days but within eight hours of getting home, he suffered a really bad seizure. I phoned for an ambulance and the paramedics arrived minutes later, but they couldn’t bring him round. They tried everything, medication administered rectally and under his tongue as well as injections, but nothing worked. 

“We were helicoptered to Addenbrooke’s where Oscar was put in a coma for two weeks – it was all so crazy and chaotic.”

“Oscar’s surgeon suspected there was a problem with his tubing, but when she went to change it, his head caved in and his skull crumbled in her hand.” 

He had developed meningitis and his whole head was full of infection. His shunt was eventually replaced and he was put on IV antibiotics. He lost his eyesight completely for a while and he lost feeling in the left-hand side of his body. He had to be tube-fed and couldn’t move or sit; it was like he had reverted to being a newborn baby again.

Thankfully, Oscar’s now exceeding all expectations. His medical reports said he had suffered such severe brain damage that he wouldn’t progress developmentally past the age of eight months old. It was awful to hear. I left hospital a single mum with a very poorly child and no real support. There was no running away from it, we just had to learn to adapt, but I’m glad to say that Oscar keeps proving everyone wrong. He does still have a lot of needs. 

“As well as permanent brain damage, he has autism, global developmental delay and he suffers a type of muscle weakness called hypotonia, but I was told he’d never walk or talk and he’s started doing both.”

He couldn’t even crawl because his muscles weren’t strong enough to hold himself up, but physical therapy has made all the difference and now you wouldn’t even know that had been an issue. He was also non-verbal for a long time, but he’s had speech and language therapy and six months ago he started developing words. 

“He’s a little chatterbox now – what he says doesn’t make sense but it’s fantastic to hear him.”

What people fail to understand four years after from Oscar’s treatment is that we’re still living with the aftermath of what he’s been through. We have a great support network through his family and are really lucky that so far he’s not had any regrowth, but last weekend we went for a routine MRI scan and Oscar vomited under anaesthetic and stopped breathing for two and a half minutes. He had to be ventilated and have his lungs cleared out. He still needs a lot of support for his age but, considering what we were told he’d be like, he’s an absolute miracle, and such a happy little boy. 

“He’s my hero.”

The four months Oscar spent on a children’s cancer ward opened my eyes to this disease and made me want to do all I can to raise awareness of it. The fact there’s still no cure for it amazes me and it’s so wrong that treatments for brain tumours haven’t changed in years. I’m keen for more people to understand brain tumours and their symptoms, including medical professionals, and I want to empower parents to trust their instincts. 

“If, like me, you believe there’s something wrong with your child, don’t give up – you know them best and you know if they’re not themselves.”

Tessa Crane
February 2023

Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.

Brain Tumour Research is determined to change this.

If you have been touched by Oscar’s story you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy

Together we will find a cure