A woman whose baby had a brain tumour has claimed she had to see a GP 18 times before he was diagnosed.
Tessa Crane, 29, said she was dismissed as a nervous first-time mum and prescribed anxiety medication when she took baby Oscar to the doctors.
Eventually the eight-month-old was diagnosed with a grade 2 choroid plexus papilloma and a build-up of excess brain fluid, known as hydrocephalus, in April 2018.
Now five, Oscar has undergone 11 brain surgeries but been left with permanent brain damage, as well as autism, global developmental delay and decreased muscle tone known as hypotonia.
Ms Crane, from Lowestoft in 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, Ms Crane knew newborns could be challenging but recognised Oscar’s symptoms as more serious.
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, she plucked up the courage to take her son to A&E.
Within 30 minutes of arriving at the James Paget University Hospital, in Norfolk, her 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.
Ms Crane said: “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.”
Ms Crane said since then Oscar has continued to exceed everyone's expectations.
“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 the disease.
Ms Crane, 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.
"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, community development manager for 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."
Brain Tumour Research funds sustainable research at dedicated centres in the UK.
It also campaigns for the government and the larger cancer charities to invest more in research into brain tumours in order to speed up new treatments for patients.
Want a quick and expert briefing on the biggest news stories? Listen to our latest podcasts to find out What You Need To Know