All smiles
Lindsey Bidwell, 41, from Essex, can’t let her daughter swallow a single drop...
Watching my then seven-year-old daughter, Shai, jump in the pool, tears filled my eyes. I was so proud of her – after all, it had taken us a long time to get there.
Not that Shai was scared of the water or couldn’t swim, in fact she was great at it.
But if she accidentally swallowed any, it could kill her.
After Shai was born prematurely at 31-weeks, we were in and out of hospital.
Myself and my husband, Richard, were constantly on edge.
She suffered with terrible chest infections, including pneumonia, and coughed when she ate or drank.
‘Slowly,’ I’d tell her, whenever she took a gulp of her favourite blackcurrant Fruit Shoot.
To begin with, we were told it was down to a V-shaped pocket in her oesophagus – the food pipe.
It meant that at just two-years-old, she needed to have major surgery to have it corrected.
Only, half-way through in January 2012, the surgeon came out to see us.
‘We had to abort,’ he said. ‘Shai had grade II laryngeal cleft, an incomplete fusion of the tissue between the larynx and the oesophagus tube.’
It was all medical jargon and I had no idea what he meant.
‘It means anything she eats and drinks goes straight into her lungs,’ he explained. ‘A sip of water could be fatal, as she could choke.’
Suddenly, my mind raced to all those times she’d coughed after drinking juice.
She was actually choking every time.
Whenever I fed her, I could have killed her. I was filled with guilt. ‘We didn’t know,’ Richard soothed, but it didn’t make me feel any better.
After discovering the condition, Shai was quickly hooked up to a feeding machine – or ‘Piggy’ as she likes to call it.
17 hours a day, it funnels food into her bowels.
I knew it was what she needed, but I absolutely hated the thought that she wouldn’t get to be a normal little girl.
Digging into birthday cake with her siblings, Lani, four, Samuel, eight, and Reef, 12, just wouldn’t happen. Thankfully, ‘Piggy’ got to work straight away and it was comforting knowing that this way, she couldn’t choke.
But, over time, Shai became frustrated with it.
She couldn’t do things that her friends could.
Whilst she loved arts and crafts and things like that, more than anything she wanted to swim.
But with one single drop able to kill her, it was too risky.
What if she swallowed a mouthful accidentally? ‘Mummy please,’ she begged. I knew we had to try something, so we got her a private teacher.
She wouldn’t be able to swim with her friends, but this was a start.
Her teacher started her off with backstroke, making sure her head was firmly above the water. And slowly and surely he built her up. Teaching her how to hold her breath and what to do if any accidentally got in, soon Shai got the hang of it. And that day she jumped
in, she was so happy. ‘I did it!’ she shouted. Shai is now 10 and last
year she had surgery to repair the cleft, but she still can’t swallow properly.
Still hooked up to ‘Piggy,’ now we let her lick carrot
sticks and lollipops. And on special occasions,
she even gets to lick the icing from the cake.
There’s still a lot we have to
look out for.
She has to be extra cautious
not to swallow phlegm, which does mean sometimes, she has to spit it on the street.
I’ve had a few judgmental stares and comments, but I always put them straight.
Shai can’t help her condition, but they can help their attitude.
Now, we’ve even set up a charity in her name – Shai’s Smile.
So far, we’ve raised £60,000 for children with a similar condition.
‘Tubies,’ as Shai likes to call them, can have very lonely lives.
Not able to go to birthday parties because of all the food and drink, and not being able to take part in normal activities.
It can be hard, so the charity aims to bring them together.
For a few hours they can just be normal kids and it’s nice to seeing Shai smile, too.
Now, Shai’s even written a book called, Stars Can’t Shine Without Darkness, which shares her own personal story.
Sending it out to other ‘Tubies,’ along with a soft teddy, I’m just so proud of her.
It was all going into her lungs