Guest of honour

Would little Riley be able to make it to our wedding day?

Published by: Jocelyn Cook and Jean Jollands
Published on: 24 May 2012

Some days you think life can't get any better. And this was one of them. Me and my partner Darryl, 34, were on holiday with his family in Broadstairs, Kent.
Strolling along the beach, hand in hand, the evening sun was setting behind us.
‘Let's stop here for a second...' Darryl suddenly blurted out nervously.
‘What's wrong?' I asked.
The next thing I knew, Darryl dropped to one knee on the sand!
‘Will you marry me?' he beamed, slipping a white gold, diamond ring on my finger.
‘Yes!' I yelped, excitedly. ‘Yes...!' Me and Darryl, a builder, had only been together for eight months, but I knew he was The One.
We decided not to rush anything, and started saving up for our big day. ‘I want to do it all properly,' I insisted. I was going to enjoy planning every little detail of the wedding, from flowers to favours, the dress to the first dance.
After months of searching, I found the perfect diamante-encrusted wedding gown on eBay, and snapped it up. Things were coming together!
Then I discovered I was pregnant! ‘Fantastic!' Darryl whooped with joy.
The baby was due in December - just six months before our big day. ‘We'll have an extra guest!' I giggled.
At my 12-week scan, we saw our little baby for the first time. Ignoring superstition, I rushed out to buy a pram. And on the morning of our 20-week scan, me and Darryl finally booked our wedding venue - The Spa Hotel in Tunbridge Wells.
Just four hours later, at the hospital, we were still buzzing with excitement as the sonographer did my scan. ‘You're expecting a little boy!' she trilled at Darryl and me.
But then she stared anxiously at the screen. ‘I can't see your baby's heart properly,' she admitted. ‘You'll have to go for a specialist scan in a week's time.'
Our family reassured us that everything would be okay but, a week later, we travelled to the Evelina Children's Hospital at St Thomas' in London, with my mum Pauline, 55, and Darryl's mum Sandra, 61, for support.
‘Your baby has six separate heart defects,' the consultant admitted. Please God... No! ‘One or two defects is unlucky - but six is unheard of,' he said. Daryl and me listened bewildered as he rattled off all the problems with our little boy's heart. A hole in the heart, back-to-front valves, you name it...
‘Your baby's heart is struggling to pump blood around his body,' he added. ‘There's a strong chance he won't make it to birth - if he does, he won't survive long afterwards. We recommend a termination...'
Abort my baby? ‘No!' me and Darryl replied in unison. Doctors agreed to closely monitor me throughout the pregnancy.
Through the following months, Darryl was my rock. I never once saw him crumble. When he got upset he'd go hide in the kitchen, then quickly wipe away his tears.
Our lives had been turned upside down. Instead of planning excitedly for the future, putting the finishing touches to the wedding, and buying baby bits, there were nervous scans.
What would we do if our son didn't make it?
At 38 weeks, Darryl was by my side as baby Riley was born by Caesarean, a 7lb 1oz bundle. I only caught a glimpse before he was whisked to intensive care to have an operation to help pump blood around his body.
The epidural had left my legs weakened and I wasn't allowed at Riley's side. But I rallied when Darryl told me he'd made it through his op. It was three agonising days before I was strong enough to see the poor mite, all of him attached to tubes and wires.
‘He looks so helpless,' I sobbed, staring at his big eyes.
Next day, I was allowed to hold him. I was terrified I'd knock his tubes out, but my body fizzed with love. ‘Stay strong, Riley Roo,' I whispered.
He'd have to. Because the following day brought another operation, inserting a shunt to connect his heart valves and keep his blood pumping smoothly.
‘There's a risk he might not make it through,' the doc said.
‘We always advise parents to kiss their little ones goodbye,' a nurse added gently. ‘In case the worst happens...'
Tears streaming, I couldn't bring myself to say the words. ‘C'mon, little man. Fight!' I urged instead.
And he did. The shunt would need to be replaced when he was 18 months old, and he'd receive regular check-ups but, at seven weeks old, we were allowed to bring him home.
‘Finally he's where he belongs,' Darryl smiled, as our baby lay in his crib that night.
Riley was prone to infection and we had to watch him like a hawk but, after five months, he was doing really well... and we realised our wedding was booked for a month's time.
After checking with Riley's doctors that we were okay to go through with it, we only had four weeks to organise everything! ‘Right, we've sent out "save the date" notes,' I panicked. ‘But I'll have to call everyone, let them know the wedding really is on!'
‘I'll sort the cake!' promised my step-mum Christine.
‘And I'll do your hair,' offered my mate Fiona, 34.
What a rush! But all our friends and family rallied. So much for spending ages organising the perfect wedding! Still, all that mattered was that my family was safe and happy.
‘The star of the wedding is Riley,' I smiled. ‘He's going to be the pageboy. He'll look so gorgeous in his little suit, he'll steal my thunder!'
The big day arrived all too soon. My dad Tim, 58, walked me down the aisle. There was my rock Darryl waiting for me. And there was my beautiful little pageboy. He looked so gorgeous in his tiny black suit and pink cravat, I had tears in my eyes.
There'd been times when we'd thought he wouldn't make it. But here he was, guest of honour at our wedding, just like we'd dreamed of.
There was no fancy honeymoon abroad, because Riley couldn't fly, but we spent the night at the hotel, while Darryl's mum and dad took him home. We woke at 6am, though, and we missed him so much, we asked them to bring him back to us!
Riley's health was up down over those next months. Just before his first birthday, he endured a complicated eight-hour operation to help his circulation. Yet again, we were warned to say goodbye. Finally, the surgeon emerged...
‘I'm baffled... Riley's heart is magical!' he grinned. ‘I've no idea how it's still fighting, but it is! He's going to be okay.' Bless him, he was home in time to celebrate his birthday!
He's 15 months old now and, to look at him, you'd think there was nothing wrong. He'll need more surgery when he's three, though, and will need a heart transplant at 18.
We can't thank the staff at the Evelina Children's Hospital enough. Darryl's parents have built a mini railway line called Riley's Railway at the Lavender Line in Isfield, East Sussex, which charges 50p a ride for kids to raise money for the hospital.
And Darryl's being sponsored to do the London to Brighton bike ride in aid of the British Heart Foundation.
We've so much to be grateful for. Some days you think life can't get any better - and, with Riley in my life, I know that's true.
Michelle Lewis, 32, Tunbridge Wells, Kent