A worried mum repeatedly dismissed as a “nervous first-time' parent when she took her sick infant son to GPs was later told he had a dangerous brain tumour. Tessa Crane, 29, had serious concerns about son Oscar's health when he was about seven months old and took him to doctors 18 times in a single month.
However, her concerns were dismissed as being those of a first-time mum and she was even prescribed anti-anxiety medication. Finally, after being turned away another time, desperate single mum Tessa took Oscar to her local A&E department.
Within 30 minutes Oscar was blue-lighted to hospital after being diagnosed with a low-grade but potentially life-threatening brain tumour in April, 2018. Doctors diagnosed him as having a grade 2 choroid plexus papilloma and a build-up of excess brain fluid, known as hydrocephalus at just eight months old.
Now five, Oscar has undergone 11 brain surgeries but he has been left with permanent brain damage. He also suffers autism, global developmental delay and decreased muscle tone known as hypotonia.
Tessa, from Lowestoft, Suffolk, is working with the charity Brain Tumour Research to share her story. She said: “Oscar had a dramatic start to life, being born six weeks early by caesarean section, but he was generally a happy baby.
“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.”
Having worked with children in her role as nursery manager, Tessa knew newborns could be challenging but recognised Oscar’s symptoms as more than this. She said: “Oscar’s symptoms had been attributed to a viral infection, colic and my poor mental health – I was in bits.”
After yet another failed doctor’s appointment, Tessa plucked up the courage to take her son to A&E. She said: “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.
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Within 30 minutes of arriving at the James Paget University Hospital, in Norfolk, Tessa’s worst fears were confirmed. After having an MRI scan, Oscar was blue-lighted to Addenbrooke’s Hospital, Cambridge, for emergency surgery.
His first operation, which involved the full removal of his tumour, lasted 12 hours. Sadly, excess cerebrospinal fluid (CSF) continued gathering, requiring 10 further surgeries in the space of four months. At one point, he even had to be put in an induced coma.
Tessa said: “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. 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.”
She added: “Thankfully, Oscar’s now exceeding all expectations. I left hospital a single mum with a very poorly child and no real support, but there was no running away from it. We just had to learn to adapt and I’m glad to say that Oscar keeps proving everyone wrong.
“He couldn’t 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 know that had been an issue. He was also non-verbal for a long time, but he’s had speech and language therapy and seven 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.”
Brain tumours kill more children than leukaemia and any other cancer yet, historically, just 1% of the national spend on cancer research has been allocated to this devastating disease. Tessa, who is sharing her story during Brain Tumour Awareness month, said: “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.”
Charlie Allsebrook, of Brain Tumour Research, said: “Oscar’s story serves as an important reminder for parents to trust their instincts and not be afraid to seek second opinions if they believe something is wrong with their child. It’s fantastic to hear about the improvements Oscar has made recently. We congratulate Tessa for being brave enough to speak out and wish them both the very best for the future.”
Just last month a parliamentary report identified that the current funding system for research into the disease, the biggest cancer killer of children and adults under the age of 40, needed to be joined up from basic science through to clinical trials. It also recommended that funding bodies should ring-fence specific funding for research into childhood brain tumours where survival rates for the most aggressive tumours had remained unchanged for decades.
