When Maddie was just 30 weeks pregnant, she and her husband were faced with a heartbreaking reality – their unborn daughter was suffering from severe heart defects. With limited options in their hometown of Tasmania, the family made the courageous but certain decision to travel to Melbourne, so that their firstborn could receive world leading care at The Royal Children’s Hospital (RCH).
“In the first 20 weeks of pregnancy, everything looked normal. But we had an extra scan at 27 weeks, and that’s when we found out something was wrong,” Maddie shared.
“The doctors originally thought it was a minor heart defect, but when we went to Hobart at 30 weeks, we found out that these defects were more severe. They also confirmed that Aurora had Trisomy 21,” she continued.
It was the news of serious heart complications that completely shattered the family’s world, with both parents terrified about what his diagnosis would mean for their little girl. The immense stress they were already feeling only worsened when they learned they would have to leave their home state for their unborn daughter to receive the life-saving care she needed.
This news was only further compounded by the reality that Maddie would have to endure this journey mostly on her own, as work and financial responsibilities meant that her husband was unable to be with her in Melbourne.
“We only have one fetal cardiac specialist in Hobart, and they ultimately said that if we had Aurora here, she was going to pass away and that we had to go to Melbourne,” Maddie shared.
“So, we flew to Melbourne, met some lovely doctors at the RCH, and they said that she would most likely have to have surgery either within the first three days or the first year of life, if we’re lucky,” she added.
Due to the serious risks posed by Aurora’s diagnoses, doctors scheduled an early delivery – and tragically, it was only then that the full extent of her condition became clear. What should have been a moment of pure joy was quickly overshadowed by the news that their tiny, perfect girl had eight serious heart defects.
Aurora recovering from life-saving surgeries at the RCH
“The news was overwhelming. While we were expecting a couple of issues, we did not expect her heart to be affected so severely. We discussed the options – that hopefully, she would remain stable enough for surgery and if not, the possibility of placing her into palliative care,” Maddie said.
“And that news was, of course, awful to hear. But luckily, she held out long enough for surgery,” she further explained.
Aurora with her parents
Aurora’s tiny but mighty heart had to endure two open-heart surgeries. The first procedure, heartbreakingly, was unsuccessful, and her chest was left open as she was placed on extracorporeal membrane oxygenation (ECMO) – a machine that provides life-sustaining oxygen to the heart – while she waited for a second, riskier surgery.
Agonisingly, Maddie continued to face the anxiety and fear of each surgery without her husband by her side, gaining much-needed comfort from her mother and the excellent staff at the RCH.
“My husband had to fly in for one hour to wish us luck and then go back to work right away. It was really difficult to not have the family together. I was lucky that my mum could come up for her surgeries, so I wasn’t alone,” Maddie shared.
Despite feeling overwhelmed and isolated at times, Maddie, her husband and her mother felt reassured knowing that their daughter was receiving the best care possible. Crucially, this excellent care extended to Maddie as well, giving her strength when she needed it most.
“The support and care that we received was just amazing – not only for Aurora, but for me, my mum and my husband. For example, right before her surgery and even after, the doctors took the time to talk us through the surgery, and it didn’t feel like a faceless experience,” Maddie shared.
“And when she was open and on ECMO, the nurses in the neonatal intensive care unit were incredible. We felt really safe knowing that she was going to be properly looked after,” she further emphasised.
After days of uncertainty and a second life-changing surgery that included a full valve repair, the world-leading clinicians at the RCH gave Aurora not just a childhood, but the future she deserves.
“We just feel so lucky. We were told by a fertility specialist that I only had a five per cent chance of carrying a baby to term, and then to see her make it through the surgeries – we just feel incredibly lucky,” Maddie concluded.
Today, the family is reunited in Tasmania, with Aurora about to celebrate her milestone first birthday. They look forward to seeing the smile on her face as they throw her a wonderful, teddy bear-themed birthday party.
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