Parents adjust to life without little girl lost too soon
AN IPSWICH couple are still coming to terms with the loss of their cheeky, happy and kind little girl, who spent most of her young life in hospital.
Born "happy and healthy" on March 6 last year, at just two-and-half weeks old little Savannah Johns was diagnosed with dilated cardiomyopathy.
The condition meant her heart's ability to pump blood was hampered as the organ's main pumping chamber, the left ventricle, was enlarged and weakened.
At first it was medically managed and her parents, Jessica Covington and Cameron Johns, went on with life as normal with their first child apart from monthly visits to the hospital.
In August last year, Savannah suffered what seemed like a cold. Her condition rapidly deteriorated.
She was admitted to the paediatric intensive care unit and she was in multi-organ failure; her lungs had collapsed and her heart was struggling.
"I was a nurse myself so I was used to being on the other side of it, not (being) the mum," Jessica said.
A month on and although Savannah was stable enough to be up on a ward, she was still in severe heart failure.
With few options before them, Jessica and Cameron made the difficult decision to move interstate, away from their jobs, family and friends, to give their little girl a fighting chance.
The Royal Children's Hospital in Melbourne is the only facility in Australia which offers paediatric heart transplants and the couple reached out to the public to help fund the sudden move.
The outpouring of generosity was overwhelming, with more than $21,000 raised on a GoFundMe campaign set up by Jessica.
The family moved down to Melbourne on September 2 - Father's Day - and Savannah spent her days in hospital attached to a ventricular assist device waiting for a transplant.
"The machine got her well enough that she could do most things like a normal baby but of course you're attached to a 2m-long tube attached to a 140kg washing machine-type thing," Jessica said.
Savannah could only venture outside for 30 minutes a day due to the machine's limited battery life.
"That meant that one of us had to be with her at all times so we didn't spend a night as a family that whole time," Jessica said.
"One of us slept on a couch next to the hospital bed."
Sadly, on June 2, they lost their little angel.
She had spent 299 days in hospital since August last year and was a little over one year old.
"When you're on the VAD machine, there's a 30 per cent risk of stroke or infection that will make you ineligible for transplant," Jessica said.
"That just comes from clots or brain bleeds. We put her to bed the night before and she was fine. She just woke up screaming - she'd had a brain bleed."
They moved home to Ipswich three days later and have tried to get back into the swing of life; both are working three days a week with Jessica now back at the family business.
"I've changed jobs completely because I can't be around health anymore," she said.
The couple remember their daughter as a "charmer".
"She would be able to convince anyone to do whatever she wanted," Jessica smiled.
"She was cheeky. Happy. Kind.
'She'd often share her toys and if someone didn't want to share, she'd throw (the toys) at them."