that's life!
Eloise Williams, 41, Doreen, Vic
A smile spread across my little girl’s face as she took to the stage. Claire, eight, loved to dance. Hip-hop was her favourite style and now my husband Craig, 48, and I were watching proudly in the audience as she performed at a school concert.
Our girl looked like she didn’t have a care in the world, but each time she sprang across the stage I winced. Would this leap leave her screaming in pain?Sporty and energetic, Claire rarely sat still. But little did the parents in the audience know, she was actually battling a rare condition that meant her leg could crumble beneath her at any moment.
We first noticed something was wrong a few weeks earlier at a netball game. While we watched our older daughter, Julie, 11, from the sidelines, Claire mucked around with her dad. ‘Jump towards me,’ Craig smiled as she stood on a step.
She loved a challenge and took a giant leap, landing perfectly in front of him. But when she gave it a go for the second time, I heard a loud crack. She’d landed exactly like the first time, but this time a look of agony quickly passed across Claire’s face.
‘Arghhh,’ she screamed. As her left leg swelled up before my eyes I knew it must be broken. But how? It’d only been a little jump.
There was no time to think about that right then though. We needed to get Claire to hospital. Craig scooped her up in his arms and we jumped in the car. After running an X-ray and CT scan, a doctor confirmed what I feared. Claire’s leg was broken and so it was put in a cast. But there was more worrying news too.
‘We’ve found a large mass in Claire’s leg,’ the doctor explained, pointing to a white patch on the X-ray. The mass was shaped a bit like a football, and it was right in the middle of the large tibia bone. My heart clenched with fear. Could it be cancerous?
Claire was referred to the Royal Children’s Hospital in Melbourne for more tests, and soon after a biopsy of the bone was done to find out more.
‘It might be a malignant tumour,’ the doctor told us gently, explaining that if that was the case, they may need to amputate Claire’s leg. I couldn’t believe what I was hearing. How would our active little girl cope? It was almost too much to bear. But there was another possibility, the doctor told us. Claire could have developed a rare condition called osteofibrous dysplasia.
It causes fibrous tissue that makes up muscles and ligaments, to replace bones, leaving them incredibly weak. Heading to Claire’s bedside, Craig and I tried to reassure her. ‘The doctors are going to operate so they can find out how to make your leg better,’ we said. She was very brave as she was wheeled in for the one-hour surgery.
And when the op was over, the doctors had news – the mass wasn’t cancerous. But our little girl was suffering from osteofibrous dysplasia and if it was left untreated there was no telling when her weakened bone might crumble completely.
I couldn’t believe that such surgery was even possible.
What the doctors said next, left us floored. ‘We can do an operation to swap her leg bones,’ the surgeon told us.
I was amazed as he explained that he could take the fibula, the thinner supportive calf bone from her right leg, and use it to replace the weakened tibia in her left leg. If the surgery was a success it’d mean Claire could still have two functioning legs. She wouldn’t have to give up hip-hop dancing and netball games.
I couldn’t believe that such surgery was even possible. We were told it’d take a few months before an operation could be scheduled so we took our girl home to rest.
Of course, there was no keeping her still. The minute she was able to take off her cast, Claire insisted on performing in her school dance concert. ‘Don’t worry,’ she smiled. ‘I’ll just jump on my good leg.’ Needless to say, Craig and I were incredibly nervous watching her bound around the stage.
Finally, in January this year, it was time for Claire’s operation. The team at the Royal Children’s Hospital did an incredible job putting her at ease as she was wheeled away.
With her surgeon, Mark O’Sullivan, and Associate Professor Chris Coombs leading the operation, doctors spent a painstaking nine hours reconstructing Claire’s legs.
There was no room for error. They had to move and reattach vital veins and arteries in order to make the fibula bone strong. At last, Claire’s new leg was stabilised using four metal rods and screws attached to an outer device called a halo.
When she was wheeled into recovery later that night, Craig and I were there waiting nervously. ‘It was a success,’ the surgeon told us and relief flooded through me. ‘You’re so brave,’ I whispered to Claire
Six days later she came home in a wheelchair. And in typical fashion, she wasn’t keen to rest. ‘I want to go back to school,’ she told me, so Craig and I agreed to wheel her in for a morning. But after a few hours she was doing so well, we let her stay.
Six weeks later, Claire impressed her doctors by standing with a walking frame, and four months on she often uses crutches to get around. Craig and I are so proud of how far Claire has come.
Doctors are optimistic she’ll be back playing sport and busting out some dance moves by the end of the year. We are so grateful for everything they’ve done for our daughter.
Thanks to some amazing medical expertise, Claire’s got a bright future ahead of her.
First published in that’s life! Issue 19, 2014
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