Our battle for Bethany

One day Jacqui's daughter was as bright and mischievous as ever. The next she was fighting for her life.
that's life!

Jacqui Sword, 36, Skye, Vic

Published in issue 17, 2014

As the rain cleared, a rainbow appeared in the distance. I had to smile as I looked at it, gleaming brightly up above.

My little Bethany would have loved it. At 19 months old, she adored anything colourful. If only she was here to see it now…

When my husband Luke, 34, and I welcomed our youngest daughter into the world, she was absolutely perfect. With her wild brown curls and an infectious grin, as she grew she developed a mischievous personality and a real taste for cupcakes. Her big sister, Charlotte, now six, doted on her. Our girls were always off playing on the slide or doing something cheeky together, like jumping on the bed.

But one morning Bethany wasn’t quite herself. She was grumpy and irritable and had developed a slight fever. It must be a bug, I thought, keeping her home from day care.

That night she started vomiting, and when she was still lethargic the following day, we went to the GP. But in the waiting room, Bethany’s mood brightened. Maybe I’m worrying for nothing, I thought. The doctor gave her antibiotics and recommended rest

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Later, she refused to eat lunch, wanting to sleep in my arms instead. It didn’t take long for her to doze off, but strangely, she kept twitching and waking up. That’s odd, I thought. And when the vomiting and fever continued, I took Bethany to hospital. Medication helped lower her temperature and we were eventually sent home.

But when her vomiting became even more violent, I knew that something wasn’t right. ‘I’m taking her back,’ I told Luke. He stayed home to look after Charlotte. The doctor put Bethany on an IV drip to rehydrate her, and he noticed she was retaining a lot of fluid. ‘We’re not sure what’s going on yet,’ he told me. ‘It’s probably a virus.’

In the ward, Bethany refused to lie down, so I cradled her in my arms and we drifted off to sleep. A few hours later, at 5am, I woke with a start. Bethany was panting as though she’d run a marathon! ‘What’s wrong bub?’ I asked.

But she couldn’t even muster a breath to answer. Panic swirled in my stomach as a flurry of doctors and nurses took over. What’s going on? I wondered as I was ushered from the room.

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My hands shook as I called Luke and my sisters, Sue and Kathy, who all raced to be by my side. When they got there, Bethany was still being worked on. Doctors were doing their best, but they didn’t know what was wrong with our little girl.

As each torturous minute passed, the knot in my stomach tightened. I knew things must be bad, but I couldn’t bear to think about it.

After what seemed an eternity, doctors took us into a quiet room. ‘We can’t get a regular heartbeat,’ one said, explaining they had been working on Bethany for 45 minutes. ‘I’m sorry. There’s nothing more we can do.’

It felt like I’d been punched in the chest as the words slowly sunk in. Just 48 hours earlier, she had been a lively little girl, noisily jumping on the bed with her big sister. This couldn’t be happening.

The nurses and doctors cried with us as Luke and I held each other in disbelief. We were still in a haze when we were taken to see her. Her tiny body was covered in tubes.

Scooping her close to me, Luke wrapped his arms around us. We never wanted to let her go. At 6:45am, Bethany took her final breath. Overcome with grief, I looked down at our perfect girl. What had stolen her from us?

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It would be weeks before an autopsy could be done – but for now it didn’t matter. Bethany was gone and nothing could change that.

Breaking the news to Charlotte was unbearable. She was still so young, but we knew she understood. My heart shattered into a million pieces when we returned home without our darling daughter.

We held a funeral for Bethany nine days later. She had everything she needed placed with her – a hairbrush for her unruly curls, her trusty blankie, favourite dummy and, of course, a colourful cupcake. Her pink coffin was decorated with rainbow stickers. It was perfect, just like our little girl.

Four weeks later, we were still consumed by grief when we had to move out of our house. We’d sold it just before we lost Bethany. Leaving without her seemed impossible. Memories were everywhere – the spot where she’d taken her first steps, the room where she’d said her first words… Could we really leave it behind?

We took Charlotte around to each room, so she could collect her favourite memories. ‘You can keep them in your pocket forever,’ I said gently. I gathered them too – the girls singing Row Your Boat on our bed and eating treats at the kitchen bench.

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Two months later the autopsy results were ready. ‘Bethany died from a rare strain of hand, foot and mouth disease called enterovirus 71,’ the coroner said. I was shocked. How was that possible? Hand, foot and mouth disease was such a common childhood illness. Both our girls had contracted it before. Usually it caused sores or blisters that quickly disappeared. How could it be deadly?

The coroner explained that the rare neurological strain of the virus, EV71, had attacked Bethany’s brain stem and spinal cord, causing encephalitis – or inflammation of the brain. We were glad to have an answer, but after that, Luke and I vowed to raise awareness of the potentially fatal illness. ‘Another family shouldn’t go through this pain,’ I said.

We soon discovered many parents hadn’t heard of EV71 either. It gave us comfort to know we were helping spread the message. While there’s no specific treatment or vaccine for the virus, prevention is key. It’s passed on by direct contact, so parents should be vigilant about hand-washing and wiping down surfaces.

We miss her more than ever. We’re determined to ensure her death isn’t in vain. If we can save just one other child from the same fate, we’ll be happy.

Bethany was our little ray of sunshine, and we’ll make sure she’s never forgotten.

Hand, foot and mouth disease

*Hand, foot and mouth disease (HFMD) is a viral infection common in children. It usually has mild symptoms including fever and rashes on the feet, hands and throat.
*Like many viruses, HFMD is transmitted by direct contact or transmission from sneezes, coughs or faeces.
*Enterovirus 71, more commonly known as EV71, is an aggressive strain of the virus and it has been reported to cause paralysis or death in recent years.
*In 2012, an outbreak saw five cases of EV71 paralysis reported in NSW and Victoria, while three children were killed by the virus.
*More serious signs of the condition include weakness in the limbs, excessive drowsiness or irritability, seizures, loss of appetite and shortness of breath.

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