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Goodbye... the hardest word

Before my little Evie was born, her fight for life had already begun...


Published by: Jemma Gillard and Ryan Pilot
Published on: 6 September 2012

When you think of a christening, you think of a joyous occasion. Happy families gathered round a healthy, bonny, baby. Yet, it was so, so different for my little girl Evie, just three days old.
She was a beautiful 6lb 2oz bundle, with chubby little cheeks. But instead of proudly carrying her to church in my arms, she'd been wheeled into a hospital chapel in an incubator.
‘My gorgeous little lady,' I hushed now, stroking her tiny pink fists - the only part of her I was allowed to touch.
Normally, there'd be a joyful knees-up once the christening was over. Instead, Evie would be whisked off for the 12-hour open heart surgery
I prayed would save her life.
As my husband Scott, 39, gripped my hand, I could barely hear the hospital chaplain's words as he began the solemn service. ‘Please let my baby make it,' I willed. ‘Let my little girl live...'
I'd been just like any other excited mum-to-be when I'd found out I was pregnant. Already a mum to Daniel, nine, Megan, seven, and one-year-old Daisy from a previous relationship, I doted on Scott's kids, Hayley-Jane, 16, Mathew, 12, and five-year-old Luca. But we'd longed to have a child together and Scott hadn't stopped smiling when I told him the happy news.
‘It's like we're finally completing our family,' he beamed, planting a big, sloppy kiss on my tummy.
But it had all come crashing down at my 20-week scan. One second, Scott and I were excitedly hugging each other as we discovered we were expecting a girl. The next moment, the sonographer's face turned grave with worry.
‘What's wrong?' I pushed.
‘I'm afraid your baby's a lot smaller than she should be at this stage...' she admitted. ‘We're going to have to do extra tests.'
Maybe they'd got it wrong? ‘You know how careful they like to be these days,' Scott had reasoned, trying to reassure me.
But one look at the consultant's face when they called us back for the test results said it all. ‘Your baby has hypoplastic left heart syndrome,' she'd explained.
‘The left side of her heart hasn't developed properly...'
The main artery pumping blood from our girl's heart to the rest of her body was blocked. It was a genetic condition that affected one in 5,000 babies.
‘You've just been terribly unlucky,' the consultant said.
That's why we were here now, christening our newborn. Without her op, she wouldn't survive.
After the service, as medics whisked our baby to the operating theatre, I held on tight to the guardian angel ornament we'd bought her.
‘Watch over her,' I whispered, as she shrank out of view.Her op was to open her blocked artery, but the thought of a surgeon's knife cutting into her tiny body shook me to the bone.
There was a risk she might not even wake up from the surgery.
‘You might want to say goodbye to her... just in case,' a nurse had said gently.
Goodbye? No. We'd never give up on her.
Instead, as they worked away on our girl, Scott and I tried anything to distract ourselves.
We even went food shopping. But every tin on the shelves became a blur as tears brimmed my eyes.
Walking aimlessly down the supermarket aisles, I thought back to that 20-week scan and the terrible news of Evie's heart problems.
‘The chances of her survival are very slim,' the consultant said solemnly. ‘It might be best to have an abortion.'
Abortion? But Scott and I didn't even need to look at each other to know our answer.
‘No...' I insisted. ‘If there's a chance she might make it, we'll take it.'
So we'd stayed strong through weekly scans. She was finally born at 40 weeks, her skin mottled blue.
They'd rushed her into intensive care before I barely got a chance to hold her. But she hadn't given up, and that gave me strength. Just seven hours into her surgery, my mobile rang.
‘Dawn, I think you should come back,' the doctor began. ‘We've had to stop Evie's operation...' Terrified, we
rushed to the hospital.
‘We nearly lost her,' the consultant explained. ‘Her heart was just too weak and we had to stop operating mid-way.'
Shivering with guilt, I stared at my little girl, her tiny body swamped with tubes.
‘We always promised each other we'd be there for her,' I sobbed to Scott. ‘We should have been here when she needed us.'
He cuddled me close. ‘We didn't know this was going to happen,' he hushed. But I felt I'd let my little girl down. ‘I can't leave her side again,' I sobbed, stroking the guardian angel that I now placed next to her bed.
Over those next days and weeks, as doctors performed no less than 11 operations to stabilise Evie's heart, life became a bleak routine. Get the kids up and ready for school, spend the day next to Evie in hospital, go back home to make dinner for the kids, put them to bed. My other kids had to make do with what was left of me.
I couldn't even be there on Daniel's first day at secondary school. ‘Mummy, I wish you were here,' he said, calling me up. ‘Oh, so do I, sweetheart,' I said, fighting back tears. But, instead of being angry with me, my kids understood. ‘It's okay,' Daniel said. ‘I know it's because Evie has a poorly heart.'
As well as missing out on my children's lives, my relationship with Scott started to buckle
under the strain.
‘I just don't have the energy left to fight for my marriage,' I confided to my friend Erin, 28.
But, there was good news when Evie went under the knife for the 12th time when she was six months old.
‘We've managed to remove the chest bones that have been damaged by the constant surgeries and replace them with titanium,' doctors explained.
‘It will help protect her vital organs and make her much stronger.' And, just six weeks later, Scott and I got the news we'd been longing for. ‘Evie's strong enough to finally leave hospital.'
You know when you want to pinch yourself? That was me, unable to believe I could finally bring my little girl home.
‘She'll need a further operation when she's older,' the doctor added. ‘But, it's time you all got on with your lives.'
One day, Evie would need a heart transplant too but, for now, there was nothing to stop her living life to the full.
The kids were ecstatic when we brought their little sister home and put her down in the cot that had been waiting for
her for many months.
‘Hello, baby Evie!' Megan whooped, introducing her to her favourite dolly. ‘Is she really staying, Mummy?'
‘Forever!' I grinned. For the first few months, she still needed a portable oxygen tank to help her breathe, but she went from strength to strength.
Unfortunately, my relationship with Scott couldn't be saved and we decided to separate.
It was then that I found a strength in me I honestly didn't know I had. And as Evie turned one and started crawling and eating by herself, somehow I knew my family would make it.
Evie's two now and, despite the scar on her chest from surgery, you'd never guess how poorly she's been in the past.
She's a typical toddler who loves copying her older brothers and sisters.
‘Evie, slow down,' I shout, as she toddles off after Megan. ‘No!' she grins back, hand on her hip like a little diva.
She does get breathless when she runs and we know she will face more surgery as she gets older, but for now she's a little girl with a whole lotta heart!
Dawn Clasper, 41, Ingleby Barwick, Stockton-On-Tees