Monique Bibby, 36, Melbourne, Vic
Pushing my bub’s pram out of the doctor’s surgery, I felt tears of frustration sting my eyes.
They think I’m overreacting because I’m a new mum, I thought.
Montana was only one month old, but I just knew there was something wrong.
Her skin and eyes were yellow and she had a rash on her face.
Two different GPs and a house nurse diagnosed jaundice and eczema.
‘It’ll go away in time,’ they all said.
Mother’s intuition told me it was more than that though.
When Montana was six weeks old, I took her to a doctor who’d been recommended by a friend.
As soon as we walked through the door, his face fell.
‘You need to take her straight to hospital,’ he said.
At the Royal Children’s Hospital, Montana was admitted immediately.
A biopsy was taken from her liver, and after a nervous wait, I was shown to a private room.
‘Montana has biliary atresia,’ the consultant explained.
It meant her bile ducts were blocked at birth preventing the bile draining from her liver, causing life-threatening damage.
Doctors operated straight away to try and fix the problem, but it sadly failed.
I watched on helplessly as my little girl’s condition deteriorated.
‘I’m afraid Montana will need a liver transplant in the future,’ the consultant told me.
It was heartbreaking.
Montana was so tiny, but was already fighting for her life.
In the meantime, Montana had check-ups every two months.
During one, a doctor noticed a lump on Montana’s cheek.
More tests showed it was an xanthoma, a bump on the skin caused by dangerously high cholesterol levels.
Despite all that, she was such a happy little girl.
As soon as Montana could toddle, she’d make her way to the TV.
‘Dance, dance!’ she’d say.
Her favourite pop star was Pink and she’d watch her concert DVD over and over as she spun around the room.
Watching Montana bop along to Pink, you’d never know she was sick.
Doctors tried everything to lower her cholesterol but it was no use.
‘If she doesn’t have a transplant before she’s two, she’s at risk of a heart attack,’ I was told.
My baby girl was a ticking time bomb.
‘I’ll give her part of my liver,’ I offered, desperately.
But I wasn’t a match so Montana was placed on the donor register.
Her life was in someone else’s hands.
Each milestone she reached left me with a sick feeling.
Every new tooth or babbled word was a stark reminder she was getting closer to her second birthday.
‘If she gets too sick, the organ will go to someone else,’ the consultant warned.
So I had to isolate her at home. She couldn’t play with other children or pet her beloved animals.
Each night, I would dip her feet in bowls of icy water, trying to soothe the constant itch from the toxins building up in her body.
There’s no way the doctors will let me lose my little girl, I’d think, trying to stay positive.
As I tucked Montana into bed I’d stroke her hair.
‘Keep fighting little one,’ I’d wish.
Then just weeks before Montana turned two, the phone rang.
It’s 11pm, I thought, my heart beating. There’s only one thing it could be!
‘We’ve got a liver,’ the consultant told me. ‘We’re going to do the operation in the morning.’
Packing our bags, I felt both excited and sad.
I was happy my little girl was getting a chance at a healthy life. But I also ached for the poor family who’d lost a loved one.
I could only imagine their grief.
The next morning, Montana was prepped for surgery.
Then I kissed her goodbye before she was wheeled into theatre.
After seven hours, the surgeon came to see me.
‘Everything went well,’ he said. ‘Montana’s liver was brown and green, but we’ve given her a nice, healthy red one.’
While Montana recovered in intensive care, a nurse played Pink on her phone.
When she moved to a ward, Montana watched the pop star constantly on her DVD player.
My little girl, who was once tinged dark yellow, looked healthy and pink.
She’d lift her top up, showing off the big patch over her stitches.
‘Band aid,’ she’d say.
Just a week after the op, Montana’s cholesterol levels were zero.
And a couple of weeks after that, I was allowed to take her home.
‘Dance, dance,’ she grinned, trying to switch on the TV.
Now Montana is doing well and has white skin and eyes for the first time in her life.
Her bumps are going down and will eventually disappear.
She takes anti-rejection medication and she’ll always be in and out of hospital for check-ups.
But these days she gives the doctors a thumbs-up and a cheeky grin.
‘If anything happens to me, I want you to donate my organs,’ I told my mum, Mandy.
Knowing how it saved my girl, I would urge others to do the same.
I’m going to write to the family of the stranger who saved Montana, but I need to find the right words.
How can I truly express my gratitude for the gift of life?
Thanks to them, my little girl has a bright future ahead of her.
A lethal combination
Montana’s cholesterol was higher than that of an unfit middle-aged man who smokes.
There are only 13 other people known of in the whole world with both cholesterol and biliary atresia.
So it made it difficult for the doctors to know how to treat her.
In the months following her diagnosis, hundreds of bumps spread all over Montana’s face and body and her skin remained a deep shade of yellow.
She needed a transplant desperately.
To find information on how to become an organ donor, visit donatelife.gov.au
This story was originally published in that's life! Issue 26, 23 June 2016.