One moment, Shahnaz’s girl was drinking a cup of water, the next she was screaming in agony. Here, Shahnaz, 40, shares her story in her own words…
Giving my little girl a kiss goodbye, I felt a pang in my heart.
We were visiting relatives and it was the first time I’d ever left Raina, who was two-and-a-half.
‘I love you, I’ll see you soon,’ I told her.
I was meeting an old work colleague for a coffee, so I wouldn’t be long.
But as we sat in the cafe just 20 minutes later, I got a phone call from my family.
‘There’s been an accident,’ came the haunting words.
No-one had seen what had happened, but one moment Raina had been standing near the water cooler drinking a cup of water. The next, she was on the floor screaming.
Rushing back, I found Raina crying in agony. She was frothing at the mouth and her lips were blue.
At hospital, she was seen straight away.
The doctors said it was probably a severe allergic reaction to something and gave her an adrenaline shot.
But she was drooling a strange jelly-like substance that looked like bleach.
‘No, she’s drunk something with chemicals,’ I kept repeating, terrified.
I was sure of it.
They gave her paracetamol for the pain and the next day, she was released.
But Raina deteriorated.
Over the next few weeks, her skin turned yellow and she lost weight because she couldn’t eat or drink.
I went back and forward to different emergency departments, but nobody knew what was wrong.
Before, Raina had been happily gurgling ‘Mum’ and ‘Dad’. Now, my usually lively girl wasn’t speaking.
When she banged her upper chest and arched her back in pain, I couldn’t take it anymore.
Back at hospital, I practically begged them.
‘Please take her in, I don’t care if you think I’m crazy, I’m not going home,’ I said, tears streaming down my face. ‘I’m scared my daughter will die.’
This time, Raina had an X-ray and the doctor saw something wrong with her oesophagus. It looked like it had shrivelled up.
‘We need to get her to Westmead [Children’s Hospital] urgently,’ he said.
I almost collapsed with relief that someone was finally listening.
While we waited to be transferred, the doctor returned with a group of medical students.
‘Learn from this case,’ he told the students. ‘Always listen to the mother. In my work, the mother’s instinct is always right.’
At Westmead, Raina was put to sleep and a camera was put down her throat.
Afterwards, a doctor said her oesophagus had been badly burnt and it was clear it had been caused by a chemical.
Now, my girl had a slim chance of survival.
‘We’re going to do everything we can, but we can’t promise anything,’ I was told.
Holding her, I cried and cried.
Swallowing a battery had been ruled out because there was no obstruction in Raina’s oesophagus.
So I thought back to the water cooler.
As a toddler, it was the only thing within her reach.
Speaking to my family, we figured out a few days earlier they’d bought cleaner for the water cooler. Instead of the bicarb soda they’d asked for, the shop assistant pointed out the caustic soda.
It had been cleaned with a corrosive compound.
I didn’t blame my family at all. It was a freak accident.
Everyone rallied.
My eldest, Jamal, then 13, became like a father figure to his sisters, Sara, eight, and Amara, four, because his dad and I were at the hospital.
As Raina was so young, the doctors didn’t want to remove her oesophagus and do a transplant, they wanted to give her the best possible chance to keep it.
So, she was put to sleep before a tube was placed in her mouth, and the oesophagus was opened up forcibly with a balloon. As her oesophagus had lost the ability to push food down, she was on drips to keep her hydrated and fed, so she had a lot of needles and cannulas.
Anytime she saw someone dressed in scrubs, she’d cling onto me for dear life and cry.
It was heartbreaking.
But then my brave girl found this incredible strength to face it. She even started changing her own cannula with the nurse!
Remarkably, after a month, she was allowed home.
Now, five years on, Raina’s had over 50 procedures, including 46 dilatations.
In the last operation, they forced her oesophagus to stay open, in the hope it will grow with her.
She also has a button in her stomach. Formula goes through a tube into her stomach and she gets fed five times daily.
Thankfully, Raina, now seven, doesn’t remember the accident.
In Year One and full of life, she’s on the Student Representative Council and does gymnastics – nothing holds her back.
But she does have to be careful so the button doesn’t fall out.
So many incredible people have helped us, especially those at the hospital, who became like family to us.
‘I want to be a nurse when I grow up,’ Raina says now.
We are just taking it one day at a time. She’s alive, she’s with us. We will get through this together. ●
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