We're both doctors but we couldn't save our little girl: Watching your child dying is a parent's worst nightmare. But for GPs Simon and Emma their helplessness redoubled the agony

  • GPs Simon and Emma Slyderink, from South Shields, couldn't save daughter
  • Three years ago the couple, 38, found out Katie, 3, had tumour on her brain
  • She had radiotherapy, then four cycles of high-dose chemo for five months
  • Treatment finished end of March 2012, but in May a scan showed it was back
  • Cancer returned and Katie died, peacefully, three weeks before Christmas

By Caroline Scott

Published: 16:58 EST, 11 August 2014 | Updated: 01:32 EST, 12 August 2014


Three years ago, Simon Slyderink and his wife, Emma, both busy family GPs, had the holiday of their lives in Corsica with their three children.

Their son, Thomas, was then just five, and identical twins, Katie and Anna, were three. 'People used to stop me in the street and gasp: "Are they all yours?" ' Emma laughs. 'I loved that, but it was hard work. I remember saying to Simon on that holiday, "I think things are finally starting to get easier." '

On the window ledge of their house in South Shields is a row of photos taken that holiday. The girls are so alike, it's impossible to tell them apart. Each has a halo of blonde hair, rosy cheeks and the biggest smile.

Simon and Emma Slyderink from South Shields, Tyneside, with their children Thomas (aged 7) and Anna (aged 5)

Simon and Emma Slyderink from South Shields, Tyneside, with their children Thomas (aged 7) and Anna (aged 5)

But when these pictures were taken, Katie, apparently a picture of health, had a tumour the size of a child's fist hidden in her brain.

'GPs see a lot of things that turn out not to be serious,' says Simon, 38. 'We both spend lots of time reassuring people about headaches. In the whole of my career I have never diagnosed a child with a brain tumour.'

Emma, also 38, nods. 'I've never come across a case, either. You hope you won't, as it's such a terrible thing to tell a parent. Brain tumours in children are pretty rare.'

 

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Looking back, Emma says Katie was a little clingy on holiday and more tired than usual, but 'nothing to set alarm bells'.

But, soon after arriving home, she noticed a tremor in Katie's right hand. She spoke to work colleagues who said it was 'unusual', while Simon did what every other parent does: 'I hit the internet, looking for causes of tremor in a three-year-old's hand.'

The General Medical Council recommends doctors and their families register with a GP outside the family to get objective medical advice. When Katie's GP examined her, he found other symptoms: her right leg was stiff, her mouth slightly weak on one side. He arranged a thorough examination at their local hospital.

Katie pictured during her treatment

Katie pictured during her treatment

Emma hoped doctors would say: 'Nothing to worry about, take her home!' But 'they kept asking: "Is your husband coming?", which made me increasingly anxious.'

That evening, Katie was transferred to the Great North Children's Hospital in Newcastle for an MRI scan under general anaesthetic. 'It took longer than planned, then the doctors asked to speak to us together,' says Emma. 'My stomach turned. Simon and I know the drill when you're breaking bad news.

You ask both parents to come in, with a nurse and maybe another specialist. We knew what they were going to tell us wouldn't be good.'

Immediately, they felt like patients, not doctors. 'You know by the way people behave they're going to say something serious,' says Simon.

'They were suddenly very calm, very quiet. I had this deepening sense of dread. Then, they told us the worst, most devastating thing anyone could possibly hear.'

Katie had a huge tumour, taking up most of the left side of her brain. 'Katie was sitting on my knee,' Emma says. 'I remember folding my body over her, thinking: "This isn't happening. They've made a mistake. They looked at the wrong scan." '

Biopsy results showed the tumour was an atypical teratoid rhabdoid tumour, a rare and fast-growing cancer with a very poor prognosis. 'I'll never forget Katie's cancer specialist Dr Hale saying: "The odds are stacked against her",' says Simon. Treatment would be immediate and brutal, including major surgery to remove the tumour, and another operation to put a tube into a vein next to her heart, so she could receive drug treatment.

She'd have one cycle of chemotherapy, followed by six weeks of radiotherapy (in all Katie had 30 sessions, needing general anaesthetic each time to keep her still).

'Dr Hale spent over an hour writing it all down for us. It seemed relentless,' says Emma. As doctors, they understood the procedures, but like any parents in that situation, they couldn't take anything in.
'We thought: "My God, how is she, and how are we, going to deal with all this?" It was horrendous.'

Emma stopped work. Her mother moved in to look after Anna and Thomas, and Simon took ten weeks off so they could take it in turns to look after Katie while she was in hospital having treatment.
Thomas and Anna were told their sister had a lump in her brain and needed to stay at the hospital.

'Katie became very clingy and kept saying she wanted to go home, which broke my heart,' says Emma. 'We just told her she had something poorly in her head and we had to try to get rid of it.'

The operation on 30 June, 2011, took six hours; a high-risk procedure, it affected Katie's speech and, for three months, movement down her right side.

'In an instant, we went from being on a treatment regime to taking home a terminally-ill child. We shed so, so many tears'

One of Emma's lowest points was Katie coming round in intensive care after surgery, screaming in frustration as she couldn't sit up or talk. 'I lost it,' Emma says. 'I cried and cried because, for the first time in her life, she didn't want me near. there was nothing I could do to make it better.'

But neither Emma nor Simon considered stopping. 'Although there were times she was pushed to the limit, we felt the recommended treatment was her best chance,' says Emma. 'There were high points: when Katie learned to speak again, when she walked again. when she was just being a normal little girl.'

'There were moments that were fun, even on the ward,' adds Simon.

Katie came out of hospital in August, and Simon went back to work part-time. In September,  Anna started nursery without Katie, who was still going to hospital for radiotherapy every morning.

Katie then had four cycles of high-dose chemo, lasting five months. In all, she had ten months of constant, debilitating treatment. 'It was horrendous but, after a while, we got into a routine,' says Emma. 'The goal was getting her better. While there was hope, we could manage.

'The worst time was when Anna started reception the following year because, by then, Katie was really poorly, and we knew she'd never join her sister at school.'

Katie's treatment finished at the end of March 2012, but she seemed listless, and Emma had a strong feeling she was going backwards.

At the end of May, a scan showed the cancer had come back. 'Dr Hale came in with the nurse and we watched her close the door. Then we knew,' says Simon.

'It was much worse than the first time, because we understood this was the end. In an instant, we went from being on a treatment regime to taking home a terminally-ill child. We shed so, so many tears.'

Katie, pictured with her mother Emma, had four cycles of high-dose chemo, lasting five months

Katie, pictured with her mother Emma, had four cycles of high-dose chemo, lasting five months

Occasionally, drug trials can offer hope. But Simon and Emma felt, even if they were offered one, they couldn't put Katie through any more. 'She'd given it her best shot,' says Emma. 'She'd had enough.'

Towards the end, it became so difficult to manage Katie's pain, she was looked after by palliative care nurses and given huge doses of morphine that put her to sleep.

'For the last ten days, she lay on the sofa, and Anna and Tom would talk to her and stroke her head. It's bizarre how normal our family would have seemed,' says Simon. They'd carry Katie upstairs each night, where she'd sleep in their bed, and bring her down in the morning.

Katie died, peacefully, three weeks before Christmas, wrapped in her favourite patchwork blanket, which is still draped behind Emma on the sofa. When Simon and Emma brought her home from the undertakers, they dressed her in the sparkly, purple dress she loved to wear for birthday parties. Along with presents, her funeral flowers were laid round the Christmas tree.

Anna and Tom, grieving in their own way, wanted to go back to school. Emma felt 'lost, wrecked', with barely the energy to raise her head: 'I hadn't appreciated how physically ill I'd feel when she died. I felt sick and weak, like I was wading through mud. Just loading the washing machine was too much.'

'We both cried constantly,' says Simon. Some of Katie's drugs are still in the fridge. 'I can't bear to part with them because they've got her name on the label,' he says.

Simon felt he'd somehow failed her. 'As a doctor, I'm trained to make people better, and I'm a father, but I couldn't even help my own child.'

Katie (second left) pictured during her treatment with her father Simon and her siblings

Katie (second left) pictured during her treatment with her father Simon and her siblings

He kept a diary when Katie was ill then, a few months after her death, began to write a book. 'I was so lost, desperately trying to make sense of everything that had happened.'

The Thirteenth Star, a children's fantasy novel, is about a girl, Becky, who develops a black mark on her arm, signalling the coming of the robed monster, Angra, who lurks in shadows, hunting his victims. Dr Hale appears as Hale the Sorceress, who tries to destroy Angra.

There's no straightforward, happy conclusion. 'But writing it helped me focus on all the things Katie gave us. She was sweet, loving and so determined to get on with life.

'When we couldn't be positive, Katie found a way to brighten things up. It often seemed she was the one comforting us. She'd say: "love my mummy, love my daddy, love my Thomas, love my Anna." '

Katie will always be with them. 'We light candles every night and always put out fresh flowers for her.' says Emma. 'At Christmas, I fill a stocking for her. I can't bear not to.'

During her last few months, Simon and Emma tried to think of special experiences for Katie, but she just wanted to do simple things: picking flowers, and visiting her nana and her favourite place, Saltwell Park in Gateshead. All feature in the book.

Emma says: 'Nearly all our memories are happy. despite everything she went through, Katie was just a normal little girl who loved to play.'

The Thirteenth Star is available from Waterstones (£9.99) and as an ebook from Amazon (£4.84). proceeds go to the North of England Children's Cancer Research Fund: thethirteenthstar.co.uk

Simon with his book, The Thirteenth Star, which he wrote a few months after Katie died

Simon with his book, The Thirteenth Star, which he wrote a few months after Katie died


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