Life

By Niamh Shackleton

The creative mum of a ‘one in a million’ baby born with a rare brain tumour has decorated his life-saving medical helmet for Christmas, Halloween and Remembrance Day to make it look nicer – and even given his teddy one too.

George Devlin, from Plymouth, Devon, was born with excess fluid on his brain and a brain tumour so had to undergo life-changing surgery to remove the mass and drain the fluid at just 10 weeks old, causing him to need a plagiocephaly helmet.

The tot, now 18 months old, was forced to wear the helmet 23 hours a day for nine months to help reshape his head.

So make the ‘ugly’ clear plastic helmet look nicer, George’s mum, Stephanie Day, 27, decorated it for special occasions such as Easter, Halloween and Remembrance Sunday.

Mum-of-one Stephanie, a former personal assistant, said: “It wasn’t nice for George to have to wear the helmet but we knew it was important for him and it would benefit him in the future.

“I also made George’s bunny teddy Mr Fellows a helmet too, as I am quite crafty I decided we should decorate the helmets too.

“People would stare at the helmet anyway, so I thought it would give them a good reason to look and stop people feeling awkward for noticing.”

Stephanie and George’s dad James Devlin, 27, noticed George’s head was only decreasing on one side six weeks after he was born and at around eight weeks the lump looked to be getting bigger.

He had been delivered via forceps and ventouse due to complications during labour, so some swelling of the head was expected, but the parents grew concerned when the youngster’s condition didn’t seem to be improving and he was then rushed to hospital as he had developed ‘sunset eyes’ making it hard for him to look upwards.

After a CT and MRI scan, the young parents’ worst fears were confirmed and George was diagnosed with a brain tumour at just 10 weeks old.

George then had to undergo a nine hour surgery to remove the mass when he was 11 weeks old – just a week after being diagnosed – but has since made a miraculous recovery and didn’t need further treatment.

Stephanie said: “After eight weeks, the swelling had reduced considerably on one side of George’s head – however the right side was still very swollen and appeared to be changing shape.

“A few weeks later, we noticed that George’s eye movements were different too; he would look down a lot and seem fixated on certain objects.

“It wasn’t until George’s eyes became ‘sunset’ that we knew something was seriously wrong.

“I rang my doctors surgery and explained George’s symptoms and that his head was still very swollen from birth – I was booked in for an appointment the next morning.”

Stephanie decided to take George to a clinic that afternoon as she didn’t want to wait until the next morning and George was examined and sent to their local hospital for a CT scan.

Following the CT scan they were transferred to Bristol Children’s hospital and 24 hours later George was diagnosed with a brain tumour.

Now 19 months old, George is doing well and his parents are sharing his story in a bid to give other parents in a similar situation hope.

Stephanie said:  “During our stay in hospital we spent many nights at George’s bedside searching the internet for positive stories to bring us hope but I couldn’t find many examples of babies being diagnosed with a brain tumour.

“With that in mind, we have been working with the Brain Tumour Research team to share our story and raise awareness.

“We weren’t aware that a bulging forehead and sunset eyes were symptoms of fluid on the brain or a brain tumour or that it could happen in babies so young!

“It was heart-breaking to see our newborn go through such trauma and now I thank my lucky stars that he survived the ordeal.

“We’re adamant that George’s brain tumour diagnosis isn’t going to rob us of happy memories.

“We’re so glad to see the back of such a traumatic experience and have learnt to appreciate every moment with George, who is brave, happy and healthy.

“Our main focus is to raise awareness. If you are concerned about your child, follow your instincts.

“Life could have been very different for us if we hadn’t done so.”

Professor Silvia Marino is leading a team of researchers at the Brain Tumour Research Centre of Excellence at Queen Mary University of London which published a scientific paper on this tumour type earlier this year.

She said: “Choroid plexus tumours are rare and mostly present as severe hydrocephalus in young children.

“They constitute two to five per cent of all paediatric brain tumours, so incidence is literally one in a million.

“The tumour type which George had is low-grade – so he was quite fortunate – but other variants can be grade 2 or 3, the latter has a very poor prognosis.”

For read more about families working with the Brain Tumour Research charity, go to https://www.braintumourresearch.org/