Ellie’s journey began before she even took her first breath. Diagnosed with transposition of the great arteries (TGA) at her mum Lauren’s 20-week scan, her life would soon become a testament to courage, resilience, and the unwavering love of her family.

Lauren recalls the day of the scan vividly. “We were overjoyed, thinking everything was fine,” she says. But the sonographer noticed something unusual in Ellie’s heart. A follow-up scan reassured them at first, yet the worry lingered. It wasn’t until nearly 37 weeks, during a growth scan, that the full picture became clear. Lauren learned that Ellie’s heart valves weren’t aligned correctly — the main arteries were switched, meaning oxygen-rich blood wasn’t circulating properly.

The news was terrifying. Doctors explained that Ellie would need open-heart surgery shortly after birth, and she would be admitted to the neonatal intensive care unit (NICU). The complexity of her condition weighed heavily on Lauren and her partner, but they were determined to face it together.

Ellie was born at 39 weeks. “She responded well to the induction,” Lauren remembers. “She was perfect, but we knew this was just the beginning.” Within days, plans were made for the critical arterial switch operation. However, a complication arose: Ellie had an intramural coronary artery — one of the coronary arteries was embedded in the aorta. This reduced her survival odds, but her surgical team reassured the family they would do everything possible.

The first few days in the hospital were intense. Ellie was transferred to pediatric intensive care (PICU), where she faced pulmonary hypertension and chylothorax. She was sedated and on total parenteral nutrition (TPN) to ensure she received adequate calories. Despite these hurdles, Lauren and her family held onto hope.

Then came a terrifying moment. During recovery, Ellie suffered a cardiac arrest on the ward. Luckily, an anesthetist was present and managed to intubate her immediately. She was rushed to the cath lab, only to suffer another arrest. The PICU team stabilized her on ECMO (extracorporeal membrane oxygenation), a life-saving heart-lung bypass machine. “It was the scariest moment of my life,” Lauren says. “Our world had shattered, but we didn’t give up hope.”

The surgeons quickly planned a highly complex coronary artery bypass graft (CABG), using the left internal mammary artery (LIMA) to bypass the left anterior descending artery (LAD). This operation, routine in adults, is rarely performed on newborns due to the tiny size of their vessels — in Ellie’s case, no wider than an arm hair. The family named Ellie’s middle name after the surgeon who bravely undertook this procedure.

The surgery was a success. Ellie remained on ECMO for another five days, but gradually, her heart regained “full ventricular action.” Doctors called her a miracle baby. Lauren and her family finally allowed themselves to feel a glimmer of relief.

Recovery was far from over. Ellie developed necrotising enterocolitis (NEC), a dangerous intestinal condition. Surgeons performed a laparotomy while her chest remained open from ECMO. “It was genuinely the worst day of my life,” Lauren recalls. “The statistics were terrifying, but Ellie survived.” A stoma was created, and though it meant more adjustments at home, the family was just grateful that she was alive.

In the following weeks, Ellie endured further complications. She needed a bronchoscopy for a collapsed lung, experienced another bout of chylothorax, and required a fluoroscopy to investigate suspected diaphragmatic palsy. Each day brought a new challenge, but her determination and strength inspired everyone around her. Lauren remembers: “Ellie worked so hard, and the PICU team was incredible. They made sure she had every chance to recover.”

Feeding Ellie proved to be another challenge. Due to her stoma output, she struggled to gain weight. She stayed on TPN for three more weeks until the surgeons could perform stoma closure. Just before the procedure, Ellie developed a rapid heart rate and rigors — shivering fits indicating infection. Tests revealed a Hickman line infection, and she was placed on targeted antibiotics.

Thankfully, Ellie responded well. The Hickman line was removed, her stoma closed, and she began making significant progress. After 12 weeks in the hospital, Ellie finally returned home for the first time. Her journey was a testament to the combination of modern medicine, skilled surgeons, and an unbreakable family spirit.

Lauren reflects on the months of uncertainty: “We learned to appreciate every moment of life, no matter how small. Simple things, like watching Ellie sleep or feeding her, became victories.” Their family’s experience has also fueled a passion for raising awareness about congenital heart disease (CHD). Lauren says, “We want other families to know what to expect, to feel supported, and to understand that even when things seem impossible, hope exists.”

Ellie’s story demonstrates the fragility and resilience of life. From her prenatal diagnosis to ECMO support, multiple surgeries, and complications like NEC and chylothorax, she faced challenges that would overwhelm many adults. Yet, her courage, coupled with expert medical care and her family’s unwavering love, carried her through.

Now, Ellie is thriving. She has a story that inspires others, showing that even in the darkest hours, miracles can happen. Her parents continue to share their experience to educate, support, and encourage families navigating CHD. Lauren emphasizes: “Ellie’s journey changed us forever. She has taught us to be compassionate, patient, and grateful for life every single day.”

Through Ellie, the world sees the importance of early detection, skilled pediatric cardiac care, and family advocacy. Her story also highlights the emotional and physical challenges families face in hospitals, from learning medical procedures to coping with the stress of life-threatening complications. Every small victory, from weaning off ECMO to gaining weight and feeding safely, became a celebrated milestone.

Ellie’s journey is far from ordinary. Her courage, resilience, and miraculous recovery continue to inspire medical professionals and families alike. She embodies hope for all children born with congenital heart defects, proving that with early intervention, expert care, and unwavering love, even the most complex heart conditions can be managed successfully.

In sharing Ellie’s story, Lauren and her family hope to spread awareness of CHD, educate others about the importance of neonatal cardiac care, and encourage families to advocate for their children. Ellie may have started life facing insurmountable odds, but today, she is thriving — a true miracle baby who has conquered the challenges of transposition of the great arteries.