'Grateful for every day': Sydney toddler with rare heart condition defies the odds

Photos: Baby Ellie 12 hours after admission at Westmead on a ventilator at six-weeks-old and at Royal Children's ...
Photos: Baby Ellie 12 hours after admission at Westmead on a ventilator at six-weeks-old and at Royal Children's Hospital about a year later.  

At just two-and-a-half years old, little Ellie has spent more than half of her life in hospital.

The toddler has overcome insurmountable odds - and her parents will be "forever grateful" for the special gift that gave their daughter a chance at life. 

Ellie's journey began in early 2018 when, after a normal pregnancy and birth, her parents noticed her struggling to feed.

Photo: Ellie on respiratory support pre VAD. Supplied
Photo: Ellie on respiratory support pre VAD. Supplied 

"She was just weeks old and could barely keep any milk down," mum Kylie tells Essential Baby. "She kept on vomiting and vomiting." 

While her issues were initially dismissed as reflux, by the time she was six-weeks-old Ellie was on life support.

"She just deteriorated before our eyes," Kylie explains. "Thank god we took her to the Emergency Department at our local hospital, because the next minute we were rushed over to the ICU at Westmead.

"Ellie crashed. She stopped breathing. All the alarms were going off and by the time we realised the severity of her condition, she was on a ventilator on life support." 

Ellie was diagnosed with a form of cardiomyopathy - in short, her heart wasn't functioning as it should. She was in heart failure and the young family went on to spend the next five-and-a-half months at The Children's Hospital at Westmead.  

After a series of tests, Kylie and her husband Andrew, were faced with every parent's worst nightmare - their young daughter had a type of cardiomyopathy that meant she had no chance of improving and needed a new heart to survive.

"We were faced with two options," Kylie explains. "To fly to Melbourne, which is the only place in Australia they do paediatric transplants, or to go down the palliative route."

The family were thrust into such a devastating and "uncertain" situation, they simply learnt to take one day at a time.

Advertisement

"We were just grateful for every day we had with her", Kylie admits. "We even had a party for her 100 days in hospital as we just didn't know how much time we had left."

Photo: Baby Ellie celebrated several major milestones in hospital. Supplied

Photo: Baby Ellie celebrated several major milestones during her 420 days in hospital. Supplied

The family, originally from Sydney, relocated to Melbourne, where Ellie was admitted to The Royal Children's Hospital. The little girl was permanently attached to a breathing apparatus so had to be transported via a special air ambulance. 

Photo: Ellie on the VAD machine. Supplied
Photo: Ellie on the VAD machine. Supplied 

"We lived in fear that she wouldn't make it to transplant," Andrew tells Essential Baby. "The waiting game was very difficult, we didn't know where we were in the list, but we just knew Ellie was a priority because she was so sick."

"We had good days and bad days" adds Kylie. "You hear about people getting a call the day after they arrive in hospital with a donor match and we just hoped that would be us. But we ended up waiting nine months." 

Meanwhile, Ellie was extremely unwell, as her condition continued to deteriorate. As a temporary solution, the little girl was placed on a Ventricular Assist Device (VAD), to help pump the blood around her body. 

Supplied
Supplied 

"The VAD is a 160 kilogram machine", explains Andrew. "There were so many risks associated with putting her on the device, which required open heart surgery, but we had no choice. It was the only thing that could buy her more time."

Adds Kylie: "Even though it was a very strange and restricted life, as the device is so large and can only be unplugged for 30 minutes, thankfully it stabilised her."

The little girl stayed on the device for seven months while her parents desperately waited for good news.

They tag teamed being by Ellie's side, keeping her entertained, talking to doctors, interacting with nurses, while the other parent got a full night's sleep across the road at the hospital's temporary accomadation. 

Supplied
Supplied 

"You just did whatever you could to pass the time and stop yourself going stir-crazy," Andrew admits, describing the period as "the twilight zone".

"During this time we became very close to other families in the cardiac ward, all of whom were waiting for a heart. Some of these children didn't make it – it was soul destroying".

When she was just shy of 15-months-old, Ellie's family received the news that a heart was available.

"It was surreal," admits Kylie, "It's everything you've been hoping for, but it's still a major surgery and there are no guarantees."

"It was an extremely bittersweet moment," Andrew adds. "Knowing there was a family out there who had to say goodbye to their child, so our Ellie could receive their heart."

Photo: Ellie age two, loves to explore and has a real zest for life. Supplied
Photo: Ellie age two, loves to explore and has a real zest for life. Supplied 

"After a mammoth 16-hour surgery and four critical days later as she was slowly taken off bypass, we finally had our Ellie back."

The family celebrated the small, but extremely significant, moments, including changing Ellie's nappy for the first time without being hooked up to monitors, the young girl being able to touch her toes, her very first bath. The family was even able to enjoy a small family picnic outside the hospital grounds.

"After only being able to leave the ward for 30 minutes a day, suddenly we could spend two hours as a family enjoying time off the ward together – it meant so much more than what we ever could have imagined," says Andrew.

In April last year, after a total of 420 days in hospital, Ellie was finally able to leave.

"That was such a significant moment for our family," Andrew says. 

Now, the healthy and happy two-and-a-half year old has a real zest for life.

"She loves exploring outside, she has absolutely no fear," says Andrew. "She is our cheeky, funny, intelligent little nugget and we are just savouring every moment.

"We have such gratitude for our donor family, and that will never go away. Every time Ellie reaches a milestone, we are reminded of the family who won't get to experience their child's moments.

"Without their generosity we wouldn't have Ellie," he adds. 

According to Kylie, the whole experience has changed the family's perspective and made them appreciate what's important. 

"We are absolutely the lucky ones and so grateful."

More Australians are alive today because of organ and tissue donation. To register to be an organ and tissue donor, visit donatelife.gov.au. It only takes a minute.