Don't cry if I never wake

This op could save my son, or kill us both...

Published by: Stephanie Stafford & Amy Thompson
Published on: 14th April 2011

From the kitchen, I listened for my little son Liam in the lounge. He’d been tucked up under a duvet on the sofa all morning, bless him, playing with his Ben 10 dolls, dozing and watching telly.
‘Mummy,’ I heard him whimper.
‘Everything all right?’ I asked, sitting beside him and lifting a hand to his clammy forehead.
Poor mite had been ill all week with a fever and nasty cough.
‘Can I have a drink, please?’ he wheezed, erupting into another coughing fit.
‘Of course,’ I smiled.
But, behind my smile, I was worried about him. Me and my soldier hubby Simon, 35 – stationed in Germany, where we now lived – had known there was something wrong with Liam ever since he was a baby.
Most kids catch the odd cold, but he’d seemed to come down with everything going, taking weeks to recover.
So we’d taken him to the doctor’s, and his blood tests had come back as abnormal.
‘His liver isn’t functioning properly,’ the doctor told us when he was three. ‘It’s as if he drinks a bottle of beer a day!’
They’d rushed him in for a biopsy and given him an MRI scan. Yet the doctors still hadn’t been able to figure out what was causing the problem.
‘You’ll have to bring him in for blood tests once a month,’ we were told. ‘To keep a close eye on him.’
Two years passed, and we’d learned to live with his illnesses and hospital appointments.
When he wasn’t poorly, he was like any other little boy his age, though, he loved playing on his bike and swimming. He adored his sister Lacey, one, too.
That night, tucking him into bed, I stroked his hair until he fell asleep between coughs.
‘I’m so worried about him,’ I told Simon as we climbed into bed. ‘I just wish we knew how to make him better.’
‘I agree,’ he sighed.
The next morning, I wandered into Liam’s room to wake him. Pulling back his duvet, though, my heart stopped.
His eyes and skin had turned a sickly yellow colour.
‘Liam?’ I panicked, scooping him up. He groaned in pain, and his eyes rolled back in his head.
‘Simon!’ I screamed, heaving my little boy off the bed. ‘Something’s wrong.’
He darted into the room looking startled. ‘What?! What is it?’
As soon as he clapped eyes on Liam, he jumped into action, grabbing the phone and calling an ambulance.
My mum came to look after Lacey while we rushed Liam to a specialist hospital in Hanover, 70 miles from our home. There, doctors swarmed around Liam, hooking him up to drips.
‘What’s going on?’ I begged. ‘Is he going to be okay?’
‘Liam has suffered liver failure,’ a doctor explained. ‘We’re going to insert a camera to see what’s going on.’
Twenty minutes later, he was back with more news – and we had an answer.
‘Your son’s bile ducts are blocked,’ the doctor began. ‘It’s causing bile to become trapped in his liver.’
I stared at him in shock, gripping Simon’s hand. ‘Can’t you just clear the blockage?’ Simon asked.
‘We’re doing that, but it’s not the only problem. This has been going on for a long time, and Liam’s liver has been eroded from the inside out.’
My knees turned to jelly. All this time, he’d been dangerously ill. Why hadn’t they spotted it?
There wasn’t time to ask before the doctor dealt us another devastating blow.
‘Liam needs a new liver,’ he explained. ‘We can put him on the transplant list, but the waiting time can be more than a year.’
I forced myself to ask: ‘Does he have that long?’
He shook his head. ‘At a push, he has six months. Our best bet is to test you both to see if you could donate a part of your liver.’
Six months?! I fought the urge to be sick.
Waiting for weeks for our test results was excruciating. I could practically hear Liam’s liver ticking like a time bomb.
Then doctors discovered that I was a perfect match. Yes!
But there was a downside.
‘There’s a 50/50 chance you won’t survive the operation,’ a consultant said. ‘Even if you do, there’s a risk Liam’s body will reject your liver. You need to think about this carefully.’
‘There’s nothing to think about,’ I replied. ‘He’s my son. I’d give him anything.’ Simon supported me completely, but I knew he was scared. This operation could save Liam’s life… or kill us both.
Sitting our little boy down before the op, we explained as best we could what was going to happen.
‘Mummy will be right there next to you,’ I told him. ‘Holding your hand and everything.’ He looked confused for a moment, then…
‘So, if I have a bit of your liver,’ he started, ‘does that mean I’ll turn into a girl?’
I couldn’t help laughing. ‘No, sweetheart,’ I chuckled. ‘You’ll still be my little boy.’
‘Okay,’ he grinned.
He must have noticed the flicker of worry in my eyes, though.
‘Mummy,’ he said, looking serious. ‘If I don’t wake up, you mustn’t cry. You’ve got to look after Lacey.’
My heart broke as I hugged him. My little lad was only five, but so grown-up, so unbelievably brave. I couldn’t lose him.
Before going into theatre, I kissed Liam goodbye.
‘See you when we wake up,’ I smiled.
Turning to Simon, I fought back tears. ‘You’re going to be fine,’ he reassured. ‘I love you.’
As I drifted off under the anaesthetic, I prayed he was right.
When my eyes again flickered open, Simon’s face smiled down at me.
‘Liam…’ I murmured groggily.
‘Sshh, he’s fine,’ Simon soothed. Relief flooded over me.
Liam’s op had taken 12 hours while doctors had removed and cleaned two-thirds of my liver, keeping it on ice, ready for him.
When Simon wheeled me down to see him the next day, I couldn’t believe it was all over. His skin had such a healthy, pink glow, I barely recognised him. Three weeks later, we were both allowed home!
Liam’s now eight, and couldn’t be better. He has to take daily tablets so he doesn’t reject my liver, but it’s a small price to pay.
And the best part is seeing my little boy able to play again. He’s still shy about showing his scar when he goes swimming, but I’ve found a way to boost his confidence. ‘I’ve got one, too, remember,’ I smile. ‘Only really special people have them.’
He always giggles at that, and
he still thinks it’s weird that we share a liver.
But the most important thing to me is that my boy is healthy and happy. We don’t just share an organ – we share in all the wonderful things Liam can do with his life now.
Daniela Cornes, 35, Bielefeld, Germany