Isla the smiler

May brave girl laughs through the pain

Published by: Amy Thompson and Tanya Smale
Published on: 10th May 2010

They say a smile goes a long way and costs nothing. To me and my family, that’s so true. In fact, one smile in particular in our house is considered priceless – Isla’s.
Like all newborns, she came out screaming – her big sister Emily, four, had done the same.
Only Isla wasn’t like other babies… ‘Her little feet are red raw!’ frowned my hubby Andy, as
I held her for the first time. Looking down, I gasped.
Our poor baby had angry, red blisters on her legs, and her tiny feet looked like they’d been scrubbed with a scouring pad.
How on earth had that happened?
The doctor ran tests straight  away and soon gave us the answer.
‘Isla has a condition called epidermolysis bullosa,’ he told us. ‘Her skin has no collagen.’
Collagen? Wasn’t that something film stars injected into their lips?
Seeing our blank faces, he explained.
‘Picture your skin as a lasagne – two sheets of pasta with the meat filling in the middle holding them together. Isla’s skin is like the lasagne without the meat filling. Any friction on the top layer of her skin will take it right off.’
Even the softest caress would feel like sandpaper. ‘But… how will we be able to touch her? To cuddle her?’ I worried. ‘How will we change her nappy?’
‘Very carefully,’ he replied. ‘Don’t worry, we’ll show you how to do everything. And you’ll have to use special bandages when she hurts herself. The glue on normal plasters will take her skin off.
‘Isla may also have trouble eating, too, as her throat could blister and get sore.’
Then he dropped the bombshell.
‘Isla’s condition is what we call life-limiting,’ he explained, gently.
‘Most children with EB don’t see puberty.’
My… I shook my head, trying to comprehend. My baby might not make it to her teens?
I stared down at her, snuggled in my arms. She looked just like Emily had, with big brown eyes and a tuft of amber curls on her head.
But her skin was as delicate as a butterfly’s wings and her life as fragile as a china doll.
‘All I want to do is hold her tight, smother her in kisses,’ I wept.
Instead, me and Andy had to touch her as little as possible. Rather than picking her up to give her a hug, we had to carefully lift her from under her nappy so as not to brush her skin.
I couldn’t even breast feed her because the slightest graze of her cheek on my dressing gown left her with a gaping wound.
And letting Emily play with her little sister was difficult.
‘I want to hold her, Mummy,’ she pouted.
‘Isla’s very fragile, sweetheart,’ I explained, gently. ‘She’s not like other children. We have to be very, very careful when we touch her.’
I could see the frustration in her eyes. I’d found it hard enough getting my head around it, let alone making a four year old understand.
A few nights later, I was going past the nursery when I heard…
‘Twinkle, twinkle, little star, how I wonder what you are…’
Emily was sitting patiently beside Isla’s cot, gazing into her little sister’s eyes and singing gently. Isla giggled and gurgled, happy that her sister had found such a clever way round the ‘look, but don’t touch’ rule.
How could she be in so much pain, covered in weeping sores, yet be so cheery?
As she got older, the problems grew. She started toddling – and every parent knows how often kids tumble and bruise themselves at that stage. Poor Isla.
It was tempting to literally wrap her in cotton wool. But what life would that be for her? So, instead, we made sure she had as much fun as possible. Not hard with our little battler. In fact, we gave her a nickname – Isla the Smiler.
Her grin could light up a room. Big eyes shining, crinkling at the corners, she was always laughing.
It was even cuter when she got her two top and bottom teeth. She was always showing them off with her big beam!
And somehow, it was impossible not to smile when I was around her – even when my heart was breaking, looking at her red raw skin.
Put on music, and she’d bob along, feet firmly planted on the floor as she wiggled her bottom.
‘It must be all that singing you did when Isla was a baby!’ I joked to Emily.
Every day there was laughter – and tears. One morning, I pulled Isla’s pyjama top over her head when she gave a little scream…
No! It’d been stuck to her belly, but I hadn’t realised!
The top layer of skin had ripped off, leaving an open wound.
‘I’m so sorry!’ I gasped, quickly putting a special plaster over it.
Isla’s tears soon dried. Minutes later, my brave girl smiled at me as if to say: It’s okay, you didn’t know. Then she was off, toddling across the room towards our springer spaniel Magic.
‘Cuddles!’ she squealed, burying her face in her fur – so soft that it never hurt her.
Another time, I was going to the shops and let Emily push the buggy. Suddenly… woah! She’d accidentally steered into a bush. The leaves brushing against Isla’s cheek had sliced the top layer of her skin clean off, leaving an oozing sore on her face the size of a plum.
We carried on. But watching the horrified stares of strangers as we shopped, I wanted to scream. They were looking at me as if I was an unfit mother.
Part of me wanted the ground to swallow me up, while the other part was desperate for someone to ask what had happened. At least then I could explain.
In the end, I didn’t need to do either. Isla made it clear to everyone how happy she was.
‘Twinkle, twinkle little star,’ she sang, swinging her little legs and flashing a cheeky grin at everyone who walked by.
The gash on her face must have been so painful, but Isla smiled regardless.
I swelled with pride. Who cared what other people thought? If Isla could keep grinning, so could I. All that mattered to me was the beautiful smile lighting up my baby’s face.
Isla’s nearly two now and still proving she’s more thick-skinned than she looks.
Emily is great at keeping her safe. ‘Be careful of my little sister,’ she said to the other kids at a party recently. ‘She’s fragile.’
She certainly is. But although I used to think my little girl’s life would be filled with pain and misery, I was wrong. She couldn’t be happier.
So, if you happen to pass us in the street one day, feel free to stare. Because I can guarantee it won’t be the cuts and blisters on Isla’s face that grab your attention – just her happy little grin.
Rachael Grist, 34, Inverness