Doctors blamed too-tight shoes or an allergy - but Emily had a brain tumour
Emily in hospital
EMILY Noad is learning to walk, talk and play for the second time after surgery on a brain tumour caused a ‘factory reset.’
The four-year-old from Cadbury Heath was in a critical condition by the time the tumour was diagnosed in June last year.
Before that, parents Kelly and Jamie said they had been told by GPs and A&E staff for months that Emily’s symptoms might be caused by wearing the wrong size shoes, a virus, or that cutting out milk or strawberries would fix the problem.
The then three-year-old had begun bumping into door frames, falling over, suffering from headaches and vomiting.
Kelly, 38, who worked as a childminder until Emily’s illness, said: “I’ve looked after many children and I know what it looks like when they have a bug. This was not like this at all. I looked up the symptoms online and she had the full list of symptoms for a brain tumour.
“I was at my wits’ end and kept asking staff at RUH to do a scan but the nurse we saw was really patronising and said I shouldn’t have brought her to hospital in case it was Covid. I had to literally stamp my feet in the waiting room after Emily had been there for five hours to get them to agree to a scan.”
A CT scan revealed that Emily had a brain tumour which was pushing her brain forward into her skull, causing the headaches, balance problems and dizziness she’d been suffering. She had also developed hydrocephalus, a dangerous build-up of fluid in the brain.
Kelly said: “As soon as they’d done the scan the nurse who’d been so dismissive started treating us differently. She rang me afterwards to apologise but I didn’t want to hear it.”
Kelly was transferred by emergency ambulance to Bristol Children’s Hospital. An MRI scan confirmed the diagnosis but also that it hadn’t spread and was therefore operable. An initial five-hour operation relieved the immediate pressure on the brain, followed by a 14-hour operation two days later to remove a tumour the size of an apricot.
Emily was left with a lifelong brain shunt, which drains fluid from the brain to her stomach, as well as posterior fossa syndrome.
Jamie, 46, a civil servant, said: “It’s like a full ‘factory reset’ for the brain. Children have to learn to breathe again and how to swallow and some never manage it. We had to listen to Emily choking as she learned to swallow again.
“When she woke up from the operation she said, ‘Mummy, Daddy, juice,’ and that was the only thing she said for months because her brain forgot how to speak. She had to start from scratch again.”
While brothers Max, 13, and Joseph, 11, waited at home with grandparents, Kelly and Jamie were told that bacteria from the brain released during the surgery had caused Emily to develop bacterial meningitis too.
Jamie said: “Emily’s told us since that she can remember that part. She was lying there, unable to move or speak, and she thought she was going to die but couldn’t tell us.”
While Emily slowly got better, Kelly spent five months living at the hospital, losing her work as a childminder because her clients needed to find other settings for their children. The long stay was made more endurable by play workers funded by the Grand Appeal, who also paid for Emily’s brothers to go on days out while their parents couldn’t be with them. Charity Young Lives vs Cancer, formerly CLIC Sargent, helped the family fill in forms for grants and benefits to go towards the cost of living in the hospital and being out of work.
Jamie visited seven days a week until his daughter was discharged to recover at home, with help from physiotherapists, speech and language therapists and hydrotherapists.
Next month she will start at Longwell Green primary school with full-time, one-to-one support. As well as help with mobility and speech, she also needs to be monitored constantly in case the brain shunt fails and causes a life-threatening build-up of fluid.
Jamie said: “This sort of thing shouldn’t happen. We were due to go on holiday to Center Parcs and RUH said she was fine and we should carry on and go. The surgeon who operated on Emily said if we’d gone away, we probably wouldn’t have brought her back home alive. As it is we’ll always wonder whether she wouldn’t have got so ill if we’d been listened to when we first started taking her to the GP.”