Amputation horror: how I saved my son’s leg

'Amputation is our only option'

Even when it seemed impossible, Aimee was determined nobody would cut off her son’s leg.

Here, Aimee Dickenson, 37, tells the story in her own words.

The scream ripped through our house like nothing I’d ever heard before. Rushing towards my seven-month-old son William, I was terrified. ‘What’s wrong darling?’ I asked scooping him up.

My fear abated slightly seeing there was nothing obviously the matter. He was where I’d left him on the floor with nothing nearby that could have possibly hurt him. Still sobbing and clearly not right though, I called an ambulance. And thank goodness I did. Once at the hospital a doctor did an X-ray, and the moment the photo came back, we could all see it. William had fractures in both his tibia and fibula in his right leg. ‘How did that happen?’ I asked confused. The doctors didn’t have any answers, but they also weren’t too concerned.‘Kids heal very quickly,’ I was told as they bandaged him up and made an appointment for a cast to be put on the following week. But at that appointment, our nightmare began. ‘The bone hasn’t healed at all,’ the doctor said, shocked by William’s next X-ray. ‘I need to refer you to an orthopaedic surgeon.

An X-ray revealed the break (Credit: Supplied)

A week later the specialist told me and William’s Dad, Aaron, that our boy had a condition called congenital pseudarthrosis. Incredibly rare and with no real reason for it, the upshot was that William’s bone would never fuse together again.‘He’ll need to stay in a cast and eventually amputation could be his only option,’ the specialist explained. Unable to process what I was being told, the word ‘amputation’ just kept ringing in my ears.No way, I thought. We have to save William’s leg. From there, it felt like I was the only one battling for this outcome though. Over the next 10 months, William wore a cast. At 17 months old – and unable to walk – he had an operation to remove some of the diseased bone in his leg and insert a rod.‘I hope this works,’ I gulped to Aaron as our little boy was wheeled into theatre. Sadly, the operation didn’t have the success we hoped for and William didn’t get his wish to walk. ‘The bone still isn’t healing,’ the specialist said to us when William was two years old. ‘Amputation is our only option.’The thought of cutting off William’s leg filled me with horror, especially because I’d been doing some research.

‘There’s an American surgeon who can operate,’ I told Aaron, showing him the emails we’d been exchanging.Dr Paley in Florida had treated over 150 kids with the same, or similar, condition to William’s and had told me we had a 99 per cent chance of success in saving my boy’s limb. There was one big problem: the cost. ‘It’s going to be around $185,000,’ I explained as Aaron winced. I was home full-time and he worked hard in a fly-in-fly-out job in the mines. Even then, we were barely coping.Knowing we needed help, I started an online fundraiser and then the Southport Lions club got involved by raising an incredible $44,000. Even so, it still wasn’t enough money. I started taking in international students, ran barbecues outside the local supermarkets, held raffles at the pub, sold chocolate – you name it, I did it. At times it was awful. ‘I can’t possibly get there,’ I’d sob to my mum, Susanne, while there was a lull in cash flow. Then it would pick up and I’d be buoyed by success.

Doctors said amputation was the only option (Credit: Supplied)

In December 2017, we were at $70,000 and I did something rash. ‘I’m booking the op,’ I told Mum. She was very supportive, if not a bit surprised. ‘I need some pressure,’ I explained. ‘I’m aiming for March 13.’ I had just three months, and that’s where fate took a hand.Going to a charity ball for some inspiration, I got chatting to the organisers. The next thing I knew they had offered to run a gala luncheon for William, and in just a few hours raised an amazing $88,000.‘I don’t know how to say thank you enough,’ I sobbed.

So on March 8, I boarded the plane with William, three, and his sisters Paige, two, and Brooke, 18. Five days later, William was taken into theatre for the life-changing seven-hour surgery. All the diseased area was removed, the bone reshaped, a rod was put in and a huge bone graft was used to hold it all together. ‘I’ve never had a patient re-fracture after this surgery,’ Dr Paley told me confidently. Afterwards, William’s recovery was miraculous. ‘You’re walking already,’ his physio enthused just days later as William half hopped, half stumbled across the room with a walker. He’d been able to hobble before, but this was something else. This was the start of William’s new life with two legs. ‘I’m so proud of you,’ I said.

Mum and william surgery
Me taking William into surgery (Credit: Supplied)
Paige and William
Paige and William (Credit: Supplied)

Now back in Australia, he’s still on track, although in five years I’ll need to fundraise to take him back for another minor surgery. At times it’s felt like scaling a mountain, but we’ve saved William’s leg in the process. It’s amazing what a bit of mum’s determination – mixed with the love of a whole community – can do. William and I will be forever grateful.

Read more in this week’s issue of that’s life!

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