Mum who saved her daugh­ter’s life by LY­ING to doc­tors

Daily Mail - - Good Health - By LUCY ELKINS

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.’



‘No other op­tion’: Amanda Davies and her daugh­ter Lil

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