Kylie was the same and we clung to each other as the physical shock took hold.
Neither of us could believe that our Ellie, who’d been cooing and jumping in her bouncer just the day before, was now in such grave danger.
Her cot was whisked away as we watched, terrified and helpless.
It was an agonising 20 minutes before we were taken to ICU and our new reality was explained.
‘We know what’s wrong and we know what drugs will support her but we can’t cure her condition,’ the paediatrician said, explaining Ellie had been born with cardiomyopathy.
This meant her heart muscle was weak and struggling to pump blood around her body.
Ellie didn’t have reflux at all. The vomiting was her body’s way of saying it was too weak to digest food.
‘A third of kids get better with medication, a third stay the same and a third continue to decline,’ he said. ‘You’ll be here about four weeks as we work out where Ellie sits.’
Kylie was in tears.
It was impossible not to be as we were led in to see Ellie, whose tiny eyelids were taped shut and tubes snaked in and out of her body.
Sitting by her bedside, touching her soft little hands, Kylie and I tried to take it all in so we could be ready for all the decisions and difficulties we suspected lay ahead.
The four weeks became eight, and then 12.
Ellie was very weak but she was still smiling and laughing.
I had lots of leave from work saved so I was with Ellie and Kylie every day.
Then, at the end of April 2018, the doctors gave us a shocking choice.
‘You can start looking at palliative care options or you can relocate to Melbourne for the heart transplant list,’ it was gently explained to us.
We quickly dismissed palliative care.
We knew Ellie was a fighter.
‘We’ll go to Melbourne,’ I told the doctors.
So we flew to meet the transplant doctors in Victoria.
Initially, we were positive.
We met patients who had received transplants and it seemed like it might be a quick process.
How wrong we were!
Months later, and with no end in sight, our precious girl was deteriorating so quickly that she needed a Berlin Heart.
This is a special heart pump, designed for children, which keeps blood flowing when the heart is in severe failure.
They weren’t sure how, or if, it would work for a baby as small as Ellie but she’d die without it.
After an agonising wait during the 10-hour procedure, we were told it was a success.
More months ticked by.
The hospital became our home, along with other children fitted with Berlin hearts, and the shortage of donors became clear.
Celebrating Ellie’s first birthday in hospital, we had to find a room with enough power points to allow all the children attached to the artificial hearts to attend.
Then, after more than a year in hospital, the moment came.
‘There’s a heart for Ellie,’ a nurse said, shaking me awake.
It was very hard knowing that our dream meant tragic circumstances for another family.
But soon after, Kylie and I were kissing our 18-month-old daughter goodbye as she went to theatre.
‘Keep fighting,’ I willed her as I held Kylie and prayed we’d see her again.
Then I got a call to say the transplant had worked, but Ellie’s body was so unused to having a strong heart it was struggling to cope.
It meant she needed to stay on a bypass machine.
‘We’re going to leave her chest cavity open and gradually take her off over the coming days,’ the doctor said.
We were fearful of how confronting it would be, but it turned out that just being able to see our girl again was amazing.
Four days later, her heart was working perfectly, and her chest could be closed.
‘She did it,’ I said.
Finally, after a gruelling 420 days in hospital, we brought Ellie home.
Now three, Ellie is a funny, adventurous and cheeky little girl.
We are so grateful to Ellie’s donor family for their gift. It’s made a lifetime of difference.
For information about organ donation, visit donatelife.gov.au.
