‘My baby’s brain tumour symptoms were dismissed’

A mum whose baby daughter was diagnosed with a brain tumour, after her symptoms were dismissed as reflux for more than two months, is calling for better awareness of the condition.

Newborn Molly appeared unsettled, and aged three weeks had three seizures, said mum Corinne Wardle, a community nurse in Flintshire and Wrexham.

At eight weeks, Molly’s head was bigger than normal, she was unsettled and vomiting frequently, and her eyes would only look right – but the symptoms were dismissed by a paediatrician as reflux and colic.

But after noticing that Molly’s fontanelle – the soft spot on the top of her head – was bulging when she was 12 weeks, a doctor in A&E diagnosed a large brain tumour.

“Her eyes were going in opposite corners and her head suddenly got massive,” Corinne recalled, speaking more than two years on from the initial surgery.

Back at the hospital emergency department, the mum and baby were about to be sent home after being told there was an eight-hour wait. But when another 10-day-old baby came in with a seizure, a doctor subsequently examined Molly and rushed her straight through.

He measured her head and it was “off the chart”, said Corinne, so the doctor sent her in for a CT scan.

“He wouldn’t leave her side. He was fantastic,” she said.

The results came through instantly, and Corinne was told Molly had a large mass on her brain.

She was sent straight to Alder Hey Children’s Hospital, in Liverpool, where she underwent nine hours of surgery the following morning to remove the tumour

Baby Molly then had a year of chemotherapy, and took five different types of chemotherapy drugs as part of a clinical trial.

One of the trialled drugs caused her to stop breathing, and she had be put on a ventilator.

Molly has suffered hearing loss and global developmental delay – when a child takes longer than expected to reach key developmental milestones such as speaking and walking – as a result of the treatment.

She was in remission for two years, but in January this year, two further tumours were found, and she had more surgery.

The plan was to follow up with radiotherapy, but this risks significant cognitive impairment, Corinne said.

“She would be disabled for life, always needing support,” she said. “She won’t be able to do things like cross the road by herself or use money.”

Because of this, the family are holding off on the radiotherapy, and Molly is having three-monthly MRI scans under general anaesthetic as they watch and wait.

Hugh Adams, from Brain Tumour Research, said Molly’s case was “uniquely challenging”, adding faster diagnosis was “something we have to strive for”.

He described the interventions and surgery necessary for Molly’s survival as “really tough”, particularly for such young children, pointing out they also carry additional risks.

“Radiotherapy on a developing brain is a really tough option,” he said – and he highlighted how chemotherapy impacts the entire body before it reaches the brain.

He called for more money to be put into research on brain tumours, to hasten research into alternative treatments for the condition.

“We need to be looking at some of the newer things – maybe vaccines, maybe immunotherapy: things that are at the cutting edge of cancer treatment,” he said.

Noting current progress in treating other cancers, Mr Adams said: “We need to be doing that for brain tumours – so that people aren’t impaired by their treatment as much as they are by the actual tumour itself.”