Peterborough baby died from brain tumour mis-diagnosed as milk allergy

A Peterborough father has spoken of the heartbreak of losing his baby son after a brain tumour was misdiagnosed as a milk allergy.

Louie Moss died three years ago when he was aged just six months, of a high-grade embryonal brain tumour.

After failing to hit developmental milestones and not gaining weight at four months old, doctors thought baby Louie could have an allergy to dairy milk, which they thought he was taking in while breastfeeding.

Despite antibiotics and a milk alternative, Louie’s condition worsened, prompting a lumbar puncture which revealed a high level of white blood cells. A CT scan at Peterborough City Hospital uncovered a brain tumour which was the cause of his constant vomiting and sleeplessness.

“We were in disbelief at the news he had a brain tumour"

Louie’s dad, Robert, who has two more children aged eight and 10 months, said: “Raising Louie was different to what me and my fiancée Molly had experienced with our eldest son, Eli. We expected Louie’s symptoms to settle, but they didn’t.

“We were in disbelief at the news he had a brain tumour. I didn’t know much about the disease and to think my baby who was just months old had one was shocking.”

After surviving a cardiac arrest, Louie underwent emergency surgery at Addenbrooke's Hospital in Cambridge, where doctors drained fluid from his brain. Days later, a second operation successfully removed over 80% of his brain tumour.

Devastatingly, within two weeks a follow-up scan revealed the tumour had returned to its original size. Louie was cared for at East Anglia Children’s Hospice in Milton, Cambridgeshire, where he later died.

“It’s a decision you never expect to have to make as a parent and it was a deeply traumatic experience"

Robert, who works for the local council, said: “We were given the option to try chemotherapy but were advised that ultimately, Louie's diagnosis was terminal. After being told our son had possibly only weeks to live, we decided it was in his best interest not to exercise this option. We felt putting a baby through chemo and seeing how relentless his tumour was we were fighting a losing battle. It’s a decision you never expect to have to make as a parent and it was a deeply traumatic experience.”

Brain tumours kill more children and adults under the age of 40 than any other cancer, yet charity Brain Tumour Research says that just 1% of the national spend on cancer research has been allocated to brain tumours since records began in 2002.

Carol Robertson, national events manager for Brain Tumour Research, said: “It’s desperately sad to hear Louie’s story. Brain tumours kill more children than leukaemia and There are more than 100 different types of brain tumour, making them notoriously difficult to find effective treatments for.

“We’re determined to change that but it’s only by working together we will be able to improve treatment options for patients and, ultimately, a cure."

"Our doctor even said that in his whole career they’d never seen anything like it before”

Now Louie’s dad, Robert is planning to do his bit to raise more money for research – by putting on his running shoes and taking on the London Marathon.

He said: “It’s go big or go home with this challenge. I wanted to do something that was a proper challenge for me, a proper way to honour Louie’s life. It’s sometimes a bit tricky to balance working, being a dad and training but the support of other runners all doing it for the same cause has been a great support.”

He added: “From our experience, I think it’s harder for doctors to spot a brain tumour in a baby, they thought he could have a cold or was teething. Our doctor even said that in his whole career they’d never seen anything like it before.

“My reason for running is so that when a patient is diagnosed in the future, they are given every opportunity to attain a positive outcome.”

To donate to Brain Tumour Research via Robert’s London Marathon challenge please visit: https://www.justgiving.com/page/robsrunforlouie