You gotta smile

Would I ever get to see the moment mums long for...

Published by: Zoe Beaty & Jai Breitnaur
Published on: 3rd February 2011

Sat with the family album on my lap, I couldn’t help crying. There was my oldest Ryan, 19, in his first school play, my darling Demi, 15, beaming into the camera during a day at the beach. Even little Nikita, three, had a glorious smile in all her photos.
And then there was Jamie.
There were only a handful of photos of him – some baby pictures, a few birthday snaps, a picture of him as a shepherd in a school play. In each one, he had the same blank expression, the same downturned mouth and distant stare.
Don’t get the wrong idea. He’s not unhappy or camera-shy, it’s just that he simply can’t smile…
Apart from a few feeding problems, everything had seemed normal when Jamie was born.
But, at home, I’d noticed he wasn’t developing like our other children had.
‘He doesn’t smile or frown,’ I’d sighed to his dad Richard, 39, when Jamie was eight-weeks-old.
‘When I rattle his special keys, he turns his whole head to follow the noise, not just his eyes. And he looks through me, not at me.’
‘You’re worrying too much, love,’ Richard had said, putting his arm around me. ‘Babies develop at their own pace.’
Even the health visitor had dismissed my fears. But by the time he was three-months-old, Jamie’s face was still blank, his eyes still fixed, and I hadn’t experienced that first glorious smile.
We were referred to a specialist.
‘He has Moebius syndrome,’ he explained after tests. ‘It’s a rare, congenital condition affecting only 20 babies in every 1 million births.’
Richard had clasped my hand as my blood ran cold. Moebius syndrome? What the hell was that?
‘Is he going to die?’ Richard had asked, panic in his voice.
The doctor had shook his head.
‘No, but he will suffer facial paralysis for the rest of his life.
He won’t be able to move his eyes, eat properly, or make expressions with his mouth.’
‘He’ll never smile…’ I’d whispered, my heart breaking. ‘You’re telling me my baby will never smile?’
The specialist had nodded, sadly.
Back home, I’d laid a sleeping Jamie in his Moses basket. When his face relaxed, he looked normal, bless him. But he wasn’t, his face would never light up with joy.
Downstairs, I’d fallen into Richard’s arms and cried my heart out. ‘Come on, love,’ he’d whispered. ‘It’s not like he can’t run or play football.’
I’d looked at him bleary-eyed. ‘You know when you go to the dentist and have a filling?’ I’d sniffed. Richard nodded.
‘You know when you have to pop to the shops afterwards, and people look at your funny down-turned mouth, and you can’t smile at shop assistants, or drink properly afterwards…’
‘Yeah,’ he’d laughed, confused. ‘But it goes away in a couple of hours.’
‘Except Jamie’s won’t go away, will it?’ I’d wept. ‘His whole life is going to be like that.’
The next few years had been tough. Although Jamie said his first word ‘Daddy’ just before he turned one, he couldn’t form sentences and needed speech therapy.
All his food had to be liquidised, and I was petrified of leaving him with anyone in case he choked.
When he could finally chew solids, he had to push the food into place with his fingers.
It all took its toll on mine and Richard’s relationship. Four years after Jamie was born, we split up.
While Ryan and Demi were at school, I’d tried my best to bond with Jamie. But for all the puzzles and trips to the park, I never knew if he was happy.
The only clue I had was a little sparkle in his eyes and a twitch of his mouth.
Still, despite everything, Jamie had seemed content. He had friends, loved football and computers, and was close to Ryan and Demi. When Nikita was born, he’d doted on her, too.
But now, sat staring at the pictures of him, I worried. Senior school was fast approaching and something in him had changed… He was quiet, withdrawn, his eyes didn’t sparkle as they used to.
‘No one will know me at school,’ he worried. ‘I’ll be bullied because of my face.’
My heart breaking, I made an appointment to see the specialist.
‘There must be something you can do,’ I begged. ‘There must have been some advances over
the last 10 years?’
‘Well, there is one option…’ he began. ‘We’ve considered an operation for Jamie before, but his muscles needed time to develop.
‘The problem is, it’ll leave him with scars and, more importantly, it’s never been done before on a child.’
‘But I’d actually be able to smile!’ Jamie gasped. ‘Please let me have the operation.’
I’d had no idea how hurt he was about not being able to smile.
So, in February last year, I nervously paced the corridor of the Royal Victoria Infirmary, Newcastle upon Tyne, during his 10-hour operation.
Surgeons were taking his chewing muscles, from behind his ears, and putting them in his cheeks. He’d need to follow-up with 18 months of physio and, even then, it still might not work.
Finally, I was allowed to see him. ‘He’s been through a lot,’ the surgeon warned.
I nodded… but nothing could prepare me for what I saw.
His head bandaged, Jamie had 78 staples across his face, and his skin was swollen and bruised. He could barely focus because of the morphine controlling his pain.
‘Mum?’ he croaked.
‘Sshh,’ I smiled, holding back tears. ‘Get some rest.’
Within days, he was sitting up in bed drinking liquids. By the end of the week, he was allowed home.
But there he spent hours in his room, only coming down for tea.
‘What’s he doing up there?’ Richard asked when he visited.
‘Playing computer games and sleeping mostly,’ I guessed. The truth was, I’d no idea.
A week after he’d left hospital, Jamie came downstairs while Demi and Ryan were out and Nikita was asleep.
‘Mum,’ he whispered. ‘I’ve got something to show you.’
I turned to look at that familiar blank face. The bruising had mostly gone, and I could
recognise him as my son again.
Suddenly, as I stood watching him, his face broke into a beautiful, beaming smile.
‘Ow!’ he giggled, as my jaw dropped. ‘I’ve been practising all week, just for you, but it still hurts.’
Grabbing the camera, I took a quick snap of my son’s first smile before he had to rest his cheeks – his muscles weren’t used to being exercised like that.
I could barely see through the viewfinder because my tears were coming so fast!
Jamie still has to have physio to learn how to use his new muscles, and the scarring makes him a little self-conscious. But that will pass – it’s a small price to pay to be able to smile with his friends.
Last October, a charity took him to Disneyland with some other children from hospital. I couldn’t believe the photos he brought back.
A smiling Jamie just off a rollercoaster, a big beam as he swam with dolphins…
‘We’re going to need a bigger photo album,’ I laughed.
Now we’ve been told Jamie’s operation will go into a medical journal, so he’s going to help others. That really is something to smile about!
Lian Connors, 35, Byker, Newcastle upon Tyne