Eva Mitchell and her mum, Tiff.Photo / Carmen Bird
Eva Mitchell just turned six this month. It's the first birthday she's ever celebrated out of hospital. For a kid that doctors said wouldn't be born alive, that's pretty superhero stuff.
Last year, Eva's mum Tiff promised her daughter she would be taking her home from Ronald McDonald House to live and laugh with her big sister, Mela. Tiff made the call after realising that despite years of surgeries, strokes, relentless infections and sleepless nights, it was time to make sure Eva enjoyed her little life.
"We were in hospital waiting for a transplant, waiting for someone to fix her somehow," Tiff explains.
Tiff will be joining us for live chat on Monday from midday until 1pm. You can bookmark the page here.
Eva was born with a massive hole in her left diaphragm. Young mum, Tiff, was told that her second baby was going to die, that her "perfect life" ideal - husband, babies and white picket fence - was going to be thrown into disarray.
All of Eva's tiny organs were up in her chest cavity.
"They said that her chances were pretty slim because there was massive pressure on her heart, it was so full in her chest she wasn't able to grow lung tissue. It was pretty major," Tiff recalls.
Babies who are that sick can't swallow amniotic fluid - by eight months pregnant Tiff looked like she was carrying full term triplets.
"I think I was just numb because I was carrying this baby that they had told me was going to die."
She had to make the call to terminate or let her baby be still born - but either way she was going to die. Tiff opted for what she felt was the most natural decision, but the outcome was totally unexpected.
"At full term this blue, unresponsive baby came in to the world and they managed to get breathing tubes down her and she made it through and defied all the massive odds.
"That's when I realised that actually I was carrying this little superhero that wasn't going to go without a fight."
Eva was rigged up to a bunch of machines that kept her alive. After a fortnight she developed a huge clot in her neck.
"We'd gathered everyone to say goodbye to this little baby who I loved from the moment I was pregnant with her. I loved her fiercely because she was sick. But I hadn't really bonded with her because I was so scared of her."
But Eva proved everyone wrong again, battling on to breathe on her own. She had a stroke that made her left side droop. But her brain was so young she managed to recover from this.
However, despite the doctors best efforts to make her insides operate like normal, the hole in her diaphragm continued to rupture and eventually her stomach and bowel stopped working.
So Eva has carried on living fiercely with a peg in her stomach (or as she explains "a bow in her tummy") and a tube in her nose. Bags are attached to her for 15 hours a day, draining all the natural bile from inside her, otherwise "she'd pop."
She's fed through her blood system in to a main artery. She runs about with a Dora the Explorer backpack - essentially a stomach on the outside of her body - pumping nutrients in to her for 20 hours a day.
There are four main arteries that Eva can be fed through. Infection has caused three to call it quits.
"She's had so many infections, so many broken lines, that this is her last access that we know of," Tiff says
"This one took hours and hours to put in, and we've managed to save it for a year. It's her lifeline."
"When the time comes that we lose that line ... it's a major. That's a very big major.
"... Without it she would either starve or die from not having the right drugs."
"That line keeps her alive. That's a really artificial way of living. Your liver hates anything that's not blood. It's putting your body under a lot of strain."
"You just don't know what's going to happen to her, we just know that there's no fixing her. All it could take is a line infection ..."
"(If that gets infected) then we start praying, even though we're not religious, hopefully somebody whips something out good, hopefully technology advances, who knows. "
"I don't know."
Eva's staunch story offers hope, inspiration and perspective. But her mum, Tiff, is herself a humble hero. This 29-year-old woman is a mum raising two girls, all on her own. And her own childhood was pretty complicated. The people she calls family are the friendly faces she has chosen to warmly welcome in to her life.
"Most people have a spouse or a mum or someone else there, but it's just us."
The standard 6'o'clock parental witching hour is a juggling act, but Tiff wouldn't have it any other way. Having Eva at home is well worth it.
"It's like having a real girl. It's like having a real child. It's amazing. It's more than I could have ever dreamt for, hoped her.