Mother's lie helped reveal daughter's brain tumour

Amanda Davies lied to doctors so that they would give her daughter a brain scan. 

She pretended to A&E staff that her three-year-old daughter Lil had fallen and hit her head, then vomited. Lil would often cry out in pain and, over the space of a year, the once lively toddler had lost the ability to walk even a few steps — yet doctors repeatedly the Cradiff family  there was no need to worry. As she approached her third birthday, Amanda and her husband Aled noticed that Lil couldn’t walk upstairs as normal  and was pulling herself up using her hands. Then, after a few months, they noticed she appeared to be wobbly on her feet. So, in April 2014, Amanda took Lil to a GP. However, at the time, Lil had a chest infection and Amanda was told to bring her back when she was better. A month later, they returned and a different GP told Amanda that a letter would be sent asking for a referral to a consultant paediatrician, but didn’t offer a possible diagnosis. The months ticked by, but the appointment letter didn’t turn up and Lil’s condition dramatically worsened. As well as her problems with walking, she began to complain about pain in her head and had become withdrawn. On a family holiday in June last year, Lil’s decline was obvious. "We had to hire a pushchair as she could not walk more than three steps and wouldn’t go into the pool," says Amanda. "And a few times a day, she would hold the back of her head and scream." On their return, the family went to the GP, but he said they were in the system for a referral to a paediatrician and there was no need to speed things. In July, around a year after Lil’s initial symptoms, Amanda and Aled decided to pay privately to see a consultant paediatrician, who assured them Lil simply had hypermobile joints (also known as being double jointed), meaning that her joints flexed more than normal and she would need physiotherapy. But it still didn’t explain the headaches. "When I Googled the symptoms, one option was a brain tumour, but I convinced myself that it was so rare it was unlikely." By August and with her daughter rapidly deteriorating Amanda felt she couldn’t ignore the possibility any longer. So she decided to take Lil to A&E at the University Hospital of Wales in Cardiff with a concocted story about a brain injury. "The first doctor I saw was a junior [doctor]. He was asking Lil where she had hurt herself, and she was saying: 'I didn’t fall over.' I was scared he might dismiss us. So I quickly told him about her headaches." But the doctor seemed most concerned by Lil’s gait. "By then, the only steps she took were with her legs really wide, like a baby," says Amanda. An hour later, a senior consultant arrived and ordered a brain scan straightaway. "I was relieved they were taking me seriously," says Amanda. "I was crying at the doctor, saying: 'Thank you, thank you'." Lil was diagnosed with having a cancerous brian tumour at the back of her head. The ten-hour operation to remove the tumour took place four days after the diagnosis. Lil could not sleep for three days afterwards and she was given steroids to decrease the inflammation in the brain. Lil needed intensive physio and speech and language therapy, and her speech and movement slowly returned to normal. Her memory was affected initially. Lil was discharged after a month and the NHS paid for her to recieve proton beam therapy in America. She completed 30 sessions over six weeks and finished treatment just before last Christmas.  She has been improving ever since. The only obvious difference with other children her age is that she is a bit wobbly on her feet.

There is a risk of delayed side-effects from the surgery or the proton beam, such as hearing loss. ‘Her future is unknown at the moment,’ says Amanda.
But she knows it could have been far worse. "If I had not gone to A&E that day and effectively lied, I think Lil would be dead or her cancer would have been inoperable. I’m so glad I did what I did. I just wish I had done something sooner." David Walker, a professor of paediatric oncology at the Children’s Brain Tumour Research Centre in Nottingham says such stories are not rare and that there is a problem with the medical profession in their reluctance to accept that some rare diagnosis are still a possibility. He adds: "‘The problem is that once you have a tumour growing and creating the pressure that causes symptoms, it means damage to the brain has already taken place and that will affect the outcome."
Share page
Print page
Follow us