An impossible choice
Yet there was only one way to stop my daughter suffering a lifetime of pain
As she screamed, my heart was ripped to shreds
The minute I heard my daughter Marnie’s piercing scream, I knew.
The day I’d been dreading had come. My little girl had finally broken her leg...
Marnie had been born with a bent tibia bone in her left leg.
Doctors told me and my fiance David, 25, it had happened due to her position in the womb.
But when she was 8 weeks old, we noticed a strange pale brown patch beginning to develop on the same leg.
She had an X-ray – and five weeks later, was diagnosed with a condition called neurofibromatosis type 1.
‘It’s a genetic disorder that can cause bone problems,’ the doctor explained.
The brown patches usually indicated this condition, too.
David and
I were crushed when we heard that NF1 has no cure.
We were told that Marnie’s left tibia would eventually break, and she would need surgery to fuse the bone back together. It was a matter of when, not if.
I researched NF1 online, which I regretted immediately.
‘It can cause non-cancerous tumours,’ I stammered to David.
Luckily, none had been detected in Marnie.
Despite our worries, David and I didn’t want to wrap her up in cotton wool.
So her play dates went ahead as normal.
But now, on 29 June 2016, Marnie, at 14 months, had fallen awkwardly while trying to climb on to the sofa.
‘Marnie’s broken her leg,’ I panted to David on the phone.
David rushed straight home from work and drove us to Queen’s Hospital. There, medics gave Marnie a splint and plastered her leg before she was transferred to a specialist consultant at Royal Derby Hospital.
But further tests showed Marnie also had pseudarthrosis – where an unhealed area of bone has motion like a joint. This meant, even after repair surgery, her leg would probably break again.
Devastated, I pictured a limited future for my poor girl.
No bouncy castles, no sports...
David and I sobbed as Marnie lay in constant agony.
As a mum, I wanted to make the pain go away.
But there was one option that doctors had briefly mentioned to us.
A scary, gruesome word. Amputation.
It wasn’t something David and I considered lightly.
If she kept her leg, Marnie would live in constant fear of breaking her bones and needing more repair surgery.
But there were no guarantees that the surgeries would succeed.
Removing her lower leg altogether was a drastic step, but one we had to consider for Marnie’s sake.
We were even referred for counselling so we could come to terms with the idea. In the meantime, Marnie’s leg remained in plaster.
She still struggled with walking, but found that she could get around quickly by hopping.
Before committing to amputation,
David and I agreed to see how Marnie coped with the repair surgery.
On 22 February 2017, surgeons inserted a metal rod into her leg to fuse the bone.
But after the three-hour surgery, she was inconsolable.
Tears streamed down her face as she screamed in agony.
Seeing her suffering so intensely, I felt like my heart had been ripped to shreds.
How many more times could we put our poor, brave girl through this?
She was discharged after
two nights, and had checkups every four months.
By February 2018, we were devastated to learn that her leg still wasn’t healing properly.
‘We can’t keep prolonging her suffering,’ said David. I agreed.
The repair procedures only had a 20 per cent chance of success, and this wouldn’t be the last time.
And a serious operation every few years would affect her education.
Plus, if her leg was amputated at a young age, Marnie would be able to adapt more easily.
What had felt like an impossible choice was becoming clear.
Amputating Marnie’s leg was the best option.
She’d be losing a limb but gaining freedom from pain.
We were referred to a consultant at the Royal National Orthopaedic Hospital, where Marnie’s amputation was scheduled.
But how do you tell a 2-year-old that they’re going to lose their leg?
It was heartbreaking, but we made sure we reminded her every week that she had a poorly leg, and that the doctor had to take it away.
‘And give me a new one,’ she grinned.
‘That’s right, darling,’ I smiled.
My clever girl understood – and being so young, she wasn’t afraid.
Not being able to go on the bouncy castle at her friend’s birthday party due to her leg being plastered only encouraged her.
But David and I still desperately hoped we were doing the right thing.
On 11 October last year, Marnie’s left leg was removed just below the knee.
During her recovery from the three-hour op, she was chirpy but sometimes forgot that her leg was gone.
‘Oh, yes, I’ve got no toes!’ she said cheerfully.
Getting used to her prosthetic was difficult though. ‘I don’t want it!’ she sobbed. After the first fitting in November, I broke down in tears, wondering if we’d made a mistake after all.
But over the next few weeks, Marnie grew more used to wearing it.
The fact that it was decorated with unicorns helped!
By December, popping on her prosthetic was just a normal part of life for her.
Marnie, nearly 4, has been so brave – an inspiration to me and her dad.
Her conditions are incurable, so we know more problems could arise in the future.
Doctors have since found a suspected tumour in her right shin, but it shows no signs of growth.
And now, our brave
Marnie is walking tall.
‘Oh, yes, I’ve got no toes!’ she said cheerfully