Toddler's seizure on first day at nursery turned out to be inoperable brain tumour

Two-year-old Megan Evans had a seizure on her first day at nursery. Credit: Family photo

The parents of a toddler who had a seizure on her first day at nursery - initially thought to be caused by separation anxiety - say they were "gobsmacked" when she was later diagnosed with an inoperable brain tumour.

Two-year-old Megan Evans was dropped off for her first day at nursery in July 2020, and her mum Laura Kilby-Philips said she was "happy to go in."

But within 30 minutes, Laura had received a call from the nursery staff to say that Megan had had a seizure.

"It was such a shock," she said.

Megan was taken to the the University of Wales Hospital by ambulance.

She was checked over by a doctor, who said the seizure may have been caused by the distress of being left in childcare for the first time.

Laura said: “I could see why he may have come to that conclusion, but I had a feeling that there was something more serious going on. I am a worrier. My head will always go to the worst-case scenario.

Megan and her big sister, Mollie. Credit: Family photo

"But after that day in July, Meg seemed to recover well, so we hoped it had just been a one-off. She went back to being the happy little girl we knew and loved, always smiling and playing with her big sister, Mollie.”

But five months later, in December 2020, Megan had another seizure - this time at their home in the Fairwater.

An ambulance was called and Megan was taken to A&E, where doctors carried out tests, including an ECG.

Laura said: “All her test results came back fine and we were discharged with an information sheet about epilepsy and told we would hear from an epilepsy consultant. But I still had a niggling feeling that it was something else.”

Later that month, Laura and Rhys Evans - Megan's father - noticed more, unusual symptoms in their little girl.

She was crying a lot and seemed unable to focus. Her parents took her to the GP, who encouraged them to go back to hospital. They followed the GP's advice and the following morning, Megan was given a CT scan, which revealed an abnormality in her left temporal lobe.

After Megan suffered a second seizure in December 2020, doctors ran further tests. Credit: Laura Kilby-Philips & Rhys Evans

Laura said: “I immediately suspected it was a brain tumour but they were not the words they used. The next step was a more detailed MRI scan, which Meg had on New Year’s Day.

"We received the results quickly and when the consultant paediatric neurologist delivered them, she said it looked like a slow-growing brain tumour. She sounded very positive. She said it was in the ‘best possible place’ for surgery.”

A few days later, however, Laura and Rhys were told that the tumour was, in actual fact, inoperable.

A biopsy was performed and samples of the tumour were sent to Great Ormond Street Hospital in London. The pathology report graded it as 1 to 2 (low grade), but advised that Megan would need 18 months of chemotherapy to treat the tumour, which began in February 2021.

Laura said: “We were gobsmacked. It felt like such a long road ahead of us. Meg began her treatment with a 10-week intensive course of chemo, during which her hair fell out, and she became quite poorly and lost a lot of weight. It was a really tough time.

"The second course involved four-week cycles and the last course, which she is on now, is a six-week week cycle – three weeks on, three weeks off.”

Megan has an MRI scan every three months and so far, all the results have come back as stable.

Megan with her cuddly toy Elmo. Credit: Family photo

Laura and Rhys are now working with the charity Brain Tumour Research to help raise awareness of the disease.

The pair recently got married, and asked their guests to make a donation to the charity in Megan's honour.

Laura said: “We decided that tying the knot would really cement our family together, so we arranged the wedding quickly and invited our closest relatives and a couple of friends to celebrate with us. The girls were bridesmaids and had the best time.

"Instead of gifts, we asked our guests to make a donation in honour of Meg. We split the funds between Latch Welsh Children's Cancer Charity and Brain Tumour Research.”

According to Brain Tumour Research, brain tumours kill more children and adults under the age of 40 than any other cancer. Yet historically, just 1% of the national spend on cancer research has been allocated to the disease.

Mel Tiley, community development manager for Brain Tumour Research, said: “We’re so sorry to hear about Meg’s shock diagnosis and wish her all the very best for her treatment, which is due to finish in August. Meg’s story and reminds us of the indiscriminate nature of this awful disease.

"We thank Laura and Rhys sincerely for choosing to support our charity; their generous wedding donations will fund vital research and help get us closer to finding a cure.”

A spokesperson for Cardiff and Vale University Health Board said: “We would like to thank Laura and Rhys for raising awareness of brain tumours and the important research around this rare disease.

"The Health Board continues to provide care and support for Megan and family.”