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Born to die

Everyone thought I was hurting my girl. The truth was far worse...


Published by: Laura Hinton and Phillipa Cherryson
Published on: 2 February 2012

When it comes to my children, I've always believed I know them better than anybody else. Yet with my daughter Jade, eight, I'd not always been so sure. Compared to her siblings, Christopher, 18, and Chantelle, 15, Jade always seemed a little different...
When she was born, she'd been a tiny 4lb. She'd needed a feeding tube at six weeks because she wasn't taking enough milk.
‘She's such a pale, skinny little thing,' I'd worried to her dad Mark, 36.
‘The doctors say she's just small for her age,' he'd reassured me.
After lots of tests, they'd not really come up with much. They just concluded Jade had a ‘failure to thrive'.
That niggle of doubt had always remained, though. As she'd grown up, I'd noticed Jade's face always looked a bit older than her body. She was really short too, with a squeaky voice.
I'd taken her back to the doctors time and time again, but nobody had an answer.
In the end, after eight years of arguing with doctors since she was born, I just came to the conclusion she was different and always would be.
‘The best things come in small packages,' I reminded her. ‘You're a diamond.'
‘Yeah,' she agreed, puffing up her chest. ‘I'm a diamond!'
By now, me and Mark had split, so I had my hands full being a single mum. Luckily, Jade, Chantelle and Christopher got on really well. Jade was obsessed with dancing. She'd push back the table in our front room, then her and Chantelle would dance to Beyonce.
‘Shake your booty!' Chantelle would giggle.
Boisterous, lively and full of energy, that was my Jade. So when I noticed a bruise on her arm one morning, I grumbled at her for being clumsy.
‘You're always bruising yourself,' I sighed.
‘I think I fell over,' she yawned.
I took her to school, then came home and got on with some housework. As I vacuumed, I noticed a letter on the mat. ‘Strange,' I muttered. ‘Postman's already been.'
No, it had been hand-delivered. Reading it, my heart stopped. It was from social services. We've taken Jade over to St David's Hospital... we need you to come in as soon as possible...
Nothing made sense. Why hadn't they rung me if she'd hurt herself? And why were social services involved? A thousand questions went around my head as I rushed to the hospital.
‘Where's Jade?' I begged a group of nurses.
‘Erm, I'm not sure,' one mumbled. It was like they were deliberately avoiding my eyes. Soon, I was shuffled into a private room. An official-looking woman was in there.
‘What's going on?' I cried.
‘I'm from social services,' the woman explained. ‘The PE teacher at school noticed bruises all over your daughter's body and contacted us.'
‘Well, I saw one on her arm,' I admitted. ‘I didn't see any others, though... Just what are you implying here?'
‘Have you ever...' she started. Her tone of voice, it was like she was accusing me of something - I interrupted her before she could continue what she was saying.
‘Nobody in my family has hurt Jade,' I told her, voice shaking with emotion. I couldn't believe it - these people had totally jumped to the wrong conclusion, were making me feel like some kind of criminal!
‘Where's my daughter?' I hissed. Finally, I was taken to her. The nurse pulled back the sheet and I gasped. Her body was a map of blue and purple splodges.
‘I-I don't understand...' I stuttered, looking on in shock.
‘They just appeared, Mummy,' Jade whimpered.
‘Don't worry, sweetie,' I reassured her. ‘The doctors will find out where they came from.'
Later, I cornered them. ‘Look, even if you do think this has something to do with me, please just check,' I begged one doctor. ‘I've been saying for years there's something different about Jade...'
Finally, they agreed to run extra tests. The lady from social services was still there, though. ‘Nobody has listened to my concerns before,' I sobbed to her. ‘And now you're blaming me?'
She looked down at her feet, shuffled them uncomfortably. Clearly, she didn't know what to say. I‘d always tried so hard as a parent, but now they were questioning my judgment.
At the same time, I was so worried about Jade and felt powerless to do anything.
We didn't have to wait long for answers.
Her results came back the following morning. ‘I'm sorry,' the doctor said, grim-faced. ‘Jade has leukaemia.'
The room seemed to spin. Cancer? My beautiful girl had cancer? I fell silent, didn't have the strength to ask any questions.
‘That would explain the bruising,' the doctor was saying. ‘She'll need chemotherapy, but we're confident she'll pull through.'
‘Do what you can,' I croaked. Then I staggered back to Jade's bedside.
‘The doctors need to make you all better again,' I told her in the simplest of terms. ‘We have to stay in the hospital for a while.'
‘Okay,' she whispered.
Later, the woman from social services came to see me again. ‘We still need to investigate,' she told me. ‘Jade's on the "at risk" register.'
I was so angry, I could've exploded. ‘My daughter has cancer!' I hissed. ‘Isn't that enough for you? Can't you see that I love my daughter - I'd never hurt her. ‘
Back home, I told Christopher and Chantelle that my mum Sue, 65, would look after them while I stayed at the hospital so I could dedicate my time to Jade.
That was true... but social services also wanted me to stay away from the kids as much as possible. Even when Jade was allowed home for a few days, a social worker lurked in the background.
‘What's she doing here?' Chantelle asked, as I prepared dinner one night.
‘They have to check I'm giving our poorly girl the right food,' I told her, plastering a smile on my face. ‘Don't you worry.'
It was so hard, though. We were going through so much, yet I had this complete stranger judging my every move.
On the plus side, Jade had started chemo. She kept positive by talking about all the things she had to look forward to. ‘I'll be dancing again soon,' she'd tell me. ‘And I can go to the park and play with all my mates...'
In fact, every time I went in her room, half the children from the ward were there, painting and drawing. They liked her room the best because we'd decorated it with pink, fluffy fairy lights. She had a princess room at home, so I'd wanted to make it like that for her in the hospital.
I was gutted though, when doctors told me a month later that Jade wasn't responding well to the chemo. She'd lost a stone, her hair was falling out, and her body was struggling.
So they ran some more tests. ‘Umm, Jade has Bloom's Disease,' the doctor said. ‘It's an extremely rare condition where the patient's body tissue and internal organs age prematurely.'
His words sparked something in me. That was why Jade had always looked older than her years.
‘It makes sufferers particularly susceptible to developing cancer,' he continued slowly.
‘So that's why she's got leukaemia?' I asked. I'd always known Jade was different - now I knew my instincts had been right. He nodded.
‘You can give her treatment, though?' I asked.
‘I'm afraid there's no cure,' he added, clearing his throat. ‘Most people die in their 20s. No sufferer's been known to live beyond the age of 48.'
His words hit me like a sledgehammer. ‘No,' I gasped, clutching my throat.
My daughter had been born with a death sentence.
‘Jade can't know,' I told him.
‘We'll respect any decision you make,' he reassured me.
As the news sunk in, I tried to bumble on as best I could - as her mum, that's all I could do. I took her to the park and brought her home to Chantelle and Christopher when she felt well enough.
We went on special trips to the theatre, planned a holiday to Disneyland... anything to block out the inevitable. We knew though that she'd never be well enough to go to Disneyland. It didn't hurt to dream, though... ‘I'll give Mickey the biggest kiss,' she smiled.
Then Kate, my caseworker from social services, came to see me at home. ‘We're dropping the case against you,' she said. ‘I'm sorry.'
‘Not as sorry as me,' I sighed.
It didn't feel like I'd won any battle, though. If somehow being branded a bad mother could have saved my girl from this terrible fate, I'd have put up with it in a flash.
Poor Jade wasn't getting any better. She was put on the bone marrow transplant list, was having blood transfusions every day, but her strength was fading with each year. Still, I had to keep her spirits up, keep up the act.
Then, one day, I walked into her room and heard her whispering to a pal. ‘I know the medicines aren't making me any better,' she said, matter of factly.
I stood in the doorway crying. She was only 12 - I'd tried to shield her, but she knew - knew she was dying. It broke my heart.
Maybe it was that realisation that sped up her decline. Because soon she was too weak to get out of bed, wasn't eating or drinking. A nurse pulled me aside. ‘You need to be prepared, Jade's losing the battle,' she gently told me.
I nodded slowly. I'd known deep inside me I was losing her, but I'd never allowed myself to believe it.
So I rang Mum and told her to bring in Chantelle and Christopher. I wanted them to have the chance to say goodbye. But in her final hours, it was just me and Jade.
She turned her head to me and sighed. ‘I'm tired, Mum. I want to go to heaven now.'
She knew she was going to die, but was being so brave.
It humbled me, gave me the courage to hold back my own tears. ‘Let's get you settled in bed, then,' I smiled.
‘Can you take off my shoes first? I want to be comfy.'
For a while we just sat there, the pink fairy lights twinkling and the only sound being the nurses busying about us.
‘Can I go to the park in heaven, Mummy?' Jade asked suddenly.
‘Of course. Once you've had a rest, we'll go to the park... just think of the park now.'
After an hour, her face was pale, breath raspy. She closed her eyes. ‘Your angels are here, darling,' I whispered in her ear. She smiled.
Seconds later, she took three last puffs and was gone.
Numb with grief, silent tears trickled down my cheeks.
A week later, a horse and carriage passed through town with Jade's white casket.
We'd blinged up her coffin with pink diamonds, and put teddies and notes from us all inside. At the service, everyone wore pink, Jade's favourite colour. It was a chance to celebrate her life.
Afterwards, though, my days seemed empty. Yes, I had Chantelle and Christopher, but for four years my world had been Jade. I couldn't stop thinking about her.
I was so angry with social services. ‘How could they think I hurt you?' I wept at Jade's grave. ‘If the doctors had listened to me all those years before, if the cancer had been discovered earlier, would I have had more time with you?'
Then I realised - Jade wouldn't want me to be eaten up with anger and bitterness. Social services have a job to do, and so many children do need their help.
I just wish the last years I'd had with my precious daughter hadn't been blighted by them.
Two years have passed since we lost our pink princess. The grief and sense of loss has never left, but we try to remember all the happiness that she brought us.
That infectious giggle of hers! And the way she danced to Beyonce with her sister!
I was the one who knew what made her laugh and what made her smile. I was her mum, I knew her better than anybody else. I knew that she was different from other people. And that always will be the greatest gift I ever had.


• A spokesman for Cardiff social services said they did not think it was appropriate to comment in relation to this individual case due to patient confidentiality and respect to Jade. 


Bernie May, 38, Rumney, Cardiff