Sophia's story

Sophia's story

Christina was diagnosed with a brain tumour in February 2015 when her daughter, Sophia, was just nine months old. Then history repeated itself in the cruellest way imaginable - in December 2017, three-year-old Sophia was diagnosed with a grade 1 (non-cancerous)pilocytic astrocytoma after suffering from symptoms since she was born in May 2014 and less than three years after Christina's own devastating diagnosis.

At the same time as Christina was suffering from symptoms due to the tumour later found in her left temporal lobe, Sophia was also struggling to feed.

“She'd start choking on breast milk and when it came to weaning, she couldn't chew and swallow properly,” said Christina.

“She also suffered episodes of apnea.”

Instead of treasuring those precious early days, Christina was back and forth to doctors about their symptoms - Sophia's feeding problems were initially put down to reflux but at nine months, when things still hadn't improved, Sophia had surgery to check her oesophagus and adenoids for any blockages. Her oesophagus was clear, which meant she didn't have reflux. Her adenoids were enlarged so she had them scraped.

By the time she was 12 months old, Christina and dad, Graham, manged to get some puree in her but she was still struggling to feed – her development was also delayed and it took Sophia another five months before she had learnt to walk.

Eventually, Sophia was referred for an MRI scan. In December 2016, Sophia was sedated for the scan but woke up during it.

“As doctors told us they didn't think there was an issue with her brain and I never dreamt her feeding problems could be caused by a brain tumour, we decided to wait rather than put her through another general anesthetic in the first two years of her life,” said Christina.

But after another year of unexplained lack of growth and a battery of blood tests coming back clear, Sophia was referred for another MRI on December 19, 2017.

Christina stood watching her little girl go into the scanner.

As soon as I saw someone go to get a syringe of contrast dye and a consultant came in to look at the screens, I knew exactly why,” said Christina.

It was history repeating itself – they'd done exactly the same during my scan to show up the tumour, but now it was my precious little girl

“My legs gave way beneath me as I clung on to the bench behind the MRI scanner.

“I felt sick and kept thinking 'Not my baby, no.'

“A nurse said,' Mum's got a brain tumour and she knows exactly what that dye is for.'”

The worried couple had to wait until that afternoon when a consultant broke the devastating news – they'd found a tumour on Sophia's brain stem.

It was in the medulla part of the brain, which regulates swallowing and breathing, explaining her symptoms.

The news came just six days before Christmas, the family took Sophia home and tried their best to put on a brave face for their kids' sakes. In the New Year, the family visited Addenbrooke's Hospital, where specialists discussed the best treatment options with the family. In March this year Sophia underwent an eight-and-a-half hour operation, where surgeons were able to remove 90% of the tumour.

Sophia will now have scans every three months to monitor the tumour.

Despite Sophia's tumour being non-cancerous, low-grade tumours still have a devastating impact on a person's quality of life – Sophia has suffered from severe side-effects following her operation but the family treasure every moment with her and her siblings.

We are sharing our story as it’s crucial to help The Brain Tumour Charity raise awareness about children’s brain tumour symptoms. If we can help to save just one parent this heartache, it’s worth it.

- Christina, Sophia's mum