Mum who saved her daughter’s life by LYING to doctors
Sitting in A&E with her young daughter perched on her lap, Amanda Davies suddenly panicked. She was about to tell the doctors a lie and, for a brief moment, wondered if she was doing the right thing.
‘it was totally out of character for me, but i felt i had no other option,’ says Amanda, 40, a researcher for a building society in Cardiff. She was going to pretend that her three-year-old daughter Lil had fallen and hit her head, then vomited.
it was an act of desperation to try to get the brain scan she felt Lil urgently needed.
Lil would often cry out in pain and, over the space of a year, the once lively toddler had slowly lost the ability to walk even a few steps — yet doctors repeatedly told Amanda there was no need to worry.
She now knows she was right to trust her instinct. if she hadn’t, her beautiful daughter, now four and in her first year at school, could have been left brain damaged — or worse. For Lil had a tumour the size of a lemon growing in her brain.
When she thinks about this now, Amanda says it makes her ‘physically sick’.
Lil saw four doctors before she was finally diagnosed in A&E — not one mentioned a brain tumour, even though she had textbook symptoms. ‘it was so frustrating as, all the time, Lil was getting worse,’ says Amanda, who also has a son, ned, eight.
Until the age of two, Lil had been a typical boisterous toddler. But as she approached her third birthday, Amanda and her husband Aled, 44, a civil servant, became concerned that Lil couldn’t walk upstairs as normal — she had started to pull 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 As well as her problems with walking, she began to complain about pain in her head and had become withdrawn.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 holiday in Spain in June last year, Lil’s decline was painfully 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: “ow!” ’
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 along.
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.
‘i wanted it to be something simple, such as her joints,’ says Amanda. 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.’
yet 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 came and said they would be doing 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.” ’
Aled joined them at the hospital and a play therapist took Lil away as they talked to the doctors about what had been found on the scan.
Lil had a brain tumour at the back of her head. they would later find out it was cancerous. ‘i was in pieces,’ says Amanda. ‘i couldn’t look at the scans or take in what they were saying — it was too painful for me to process. it was the worst moment of my life.’
neither she nor Aled could control their tears as they went to collect Lil. ‘i remember the play therapist saying: “i think Mummy and Daddy have something in their eyes.” ’
their story is far from rare, says David Walker, a professor of paediatric oncology at the Children’s Brain tumour Research Centre in nottingham. ‘i have heard of lots of cases like this.
‘there is a problem with the medical profession in that they are reluctant to think of rare things such as a brain tumour as a possible diagnosis. instead, they give reassurance and tell people to see how they go.’
Brain cancer kills more children than any other type of cancer. Part of this is to do with late diagnosis.
According to recent figures from the national Cancer intelligence network, 23 per cent of all cancers are diagnosed only when someone turns up at A&E with severe symptoms — which often means it is too late for effective treatment.
With brain cancer, this trend is worse than most: 58 per cent of cases are diagnosed only after going to A&E, the highest for any cancer.
‘We do hear of a lot of people who have a convoluted route to diagnosis,’ says Sarah Mee, head of policy at the Brain tumour Charity. ‘ Many have been to the GP more than once — some will have been sent to an optician because their headaches are sometimes thought to be the result of vision problems.’
Professor Walker 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.
‘Days, months or even hours can make a difference. Sometimes, adults and children die before they get diagnosed.’
in doctors’ defence, brain tumours are not common. in Britain, 10,000 cases are diagnosed each year, so doctors may see only one or two in their career.
However, Professor Walker says that is not good enough. ‘We have to stop thinking about the exposure of individual doctors to brain tumour cases and think instead about improving the system of detecting them.’
often, by the time the tumour is diagnosed, it is inoperable. Lil’s had been caught just in time.
Had it been left, within a short time — possibly even weeks, the family were told — it might have been inoperable.
the ten-hour operation to remove the tumour took place four days after the diagnosis.
‘ it was horrendous,’ says Amanda. ‘Lil could not sleep for three days afterwards, as she had been pumped full of steroids to try to keep the inflammation in her brain to a minimum.
‘it was a waiting game to see if she pulled through and walked and talked as normal.’
Lil needed intensive physio and speech and language therapy, and her speech and movement slowly returned to normal.
‘ Her memory was affected initially: you’d ask her a question and she would look worried and say “i don’t know,” ’ says Amanda.
LIL was discharged after a month, but there was another shock for Amanda and Aled. they were told that to ensure all of the cancerous tissue was gone, Lil could have proton beam therapy — a targeted form of radiotherapy, which is thought to do less damage to the surrounding tissue.
yet it wasn’t available in this country — instead, the NHS would pay for the family to go to the U.S. to have 30 sessions over six weeks. Lil completed the 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.
However, her parents continue to live on tenterhooks — there is a 30 to 50 per cent chance that the cancer will return, and Lil has scans every three months.
there is also 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.’
thebraintumourcharity.org