‘You can let go if it’s too hard...’ I whispered. Tears streamed down my cheeks.
My tiny girl Kiara, then just two weeks old, was in the intensive care unit in hospital, battling meningitis.
She’d been born premature at 32 weeks and had Down syndrome, which causes developmental delays.
After undergoing bowel surgery just days after she’d arrived in the world, she was then hit with meningitis.
Soon Kiara’s dad, Sami, 44, and I learnt she’d need surgery to fix two holes in her heart. We tried to remain positive, but our hope was fading fast.
While she was on life support, Kiara’s ventilator tube became blocked.
Afterwards, we got heartbreaking news. A flap of muscle in Kiara’s throat that should close to stop liquid going down the wrong way had stopped working.
It causes severe aspiration, which meant a single sip of liquid could prove fatal for my girl.
‘I promise that as long as you fight, I will fight just as hard,’ I told her softly.
While our little battler made it through her first agonising weeks of life, when she came home, things weren’t easy.
Every drink Kiara consumed had to be thickened with a special formula – or else it would go into her lungs.
Helping Kiara live with her condition was difficult. As she grew, sometimes she’d have a drink accidentally. Being so young and developmentally delayed meant that she didn’t really understand the danger.
Other times she wouldn’t tell us if she was thirsty and would end up so dehydrated she’d need to go to hospital. It was an agonising balancing act.
Milk or anything fizzy can be particularly dangerous for her. One day, we found out just how dangerous...
Sami and I have always tried to find a balance between letting Kiara have fun and keeping her safe.
One time we’d taken the three kids, Kiara, then seven, Kally, then two, and Kye, then 10, to McDonald’s for lunch.
But, turning around, I was horrified to see Kiara had grabbed a sip of Kally’s cola.
‘No! You can’t!’ I gasped.
But it was too late.
Soon Kiara developed a telltale cough, caused by the fluid entering her lungs. Life-threatening pneumonia came next, followed by a collapsed lung and months in hospital.
It was hard to believe it all came down to a fizzy drink.
After many close calls, doctors suggested inserting a tube to feed liquids straight to Kiara’s stomach through her abdomen. It was then that Sami and I had to make a gut-wrenching decision.
The tube itself could put Kiara at risk of infection and we felt she had been through so much already. We wanted her to live as normal a life as possible.
So we continued to thicken Kiara’s drinks with a special formula – allowing her to consume liquids orally. We have to watch whatever she drinks like a hawk.
And every day is a risk. Take a simple thing like washing. Kiara can’t stand under a shower. She has to take baths, and washing her hair can be tough as we have to keep water away from her mouth.
She can’t go out in the rain or swim in case she swallows some water. And liquid meds or even rinsing her mouth after brushing her teeth are a no-go.
Kiara loves watermelon but sadly she can’t eat it because it’s too juicy.
We’ve also had more challenges. In September last year a scan discovered a rare tumour in Kiara’s brain.
Incredibly, the three-in-one million cyst had nothing to do with her medical conditions.
By now our little girl was 12. For years she had fought to stay alive and now we were told the tumour could cause a fatal build-up of fluid in Kiara’s brain at any moment.
‘I can’t believe this is happening,’ I said to Sami.
The only thing we could do was agree to brain surgery.
Until her operation in November, we hardly slept with worry. The surgery could affect Kiara’s mobility and short-term memory.
But thankfully, after the seven-hour procedure, Kiara proved everyone wrong – again. Waking up in the ICU, she asked for her iPad and started taking selfies!
To date our girl has had pneumonia 60 times, suffered 15 collapsed lungs and undergone 30 operations.
But she’s overcome it all.
From when she was two weeks old, I knew I could never give up on her. Now, 12 years on, I’m still determined she’ll live life to the full. Kiara is an inspiration.
It’s not fair I can’t drink water. It makes me sad. My brain tumour was naughty but it’s all gone.
Originally published in that's life! issue 24 - June 18, 2015