As a parent, there is no feeling more pure than holding your newborn for the first time and imagining a future filled with first steps, first words, birthday candles, and endless laughter. When our daughter Lily was born, my husband and I wrapped our dreams around her tiny fingers. We saw a lifetime of milestones ahead of her. In those early days, she looked healthy and perfect, and we believed—like so many parents do—that love alone would be enough to carry us forward.
But life had other plans. Plans that would test our hearts, our faith, and our understanding of what true strength really looks like.
By the time Lily was just seven weeks old, the joy of new parenthood had turned into a fear we could never have imagined. For weeks, something felt wrong. Lily struggled with feeding, cried more than seemed normal, and began losing weight. Like many parents, we trusted the reassurances we were given. We were told it was likely reflux. Then perhaps a milk allergy. We were advised to push milk however we could, believing that more feeding would solve the problem.
What we didn’t know was that Lily wasn’t being difficult. She was fighting for breath.
The Day Our World Changed
On September 13th, a date that will forever be etched into our hearts, Lily was rushed to the ICU in heart failure. In a matter of hours, our world collapsed into a blur of alarms, monitors, doctors, and words we had never expected to hear associated with our baby girl.
The cardiology team delivered news no parent is prepared for: Lily had Shone’s Complex, a rare and serious set of congenital heart defects. Her aortic valve had collapsed. The left side of her heart was underdeveloped. She had a large ventricular septal defect (VSD), nearly 1cm in size. Her lungs were swollen and struggling. Her tiny body had been forced to choose between breathing and eating—and breathing had won.
In that moment, everything changed. We were no longer just new parents. We became parents navigating a complex medical world filled with scans, consultations, surgical plans, and terrifying unknowns. The future we had imagined was replaced with a different one—one filled with courage, fear, hope, and an entirely new definition of strength.
The First Surgery: Trusting with a Shaking Heart
Just days later, on September 16th, Lily underwent her first life-saving surgery. The surgeons repaired her collapsed valve and placed a PA band to control the blood flow to her lungs. Handing over your baby to a surgical team is a kind of heartbreak that words can’t fully capture. She was so small. So fragile. And yet, she was about to face something that would test even the strongest adults.
The hours of waiting felt endless. Every minute stretched. Every sound in the waiting room made my heart race. When the doctors finally told us the surgery had gone well, the relief was overwhelming—but it was mixed with the reality that this was only the beginning.
We were told Lily would need more surgeries in the future: one to loosen the PA band, another to repair the VSD, and possibly even a Fontan procedure—an incredibly complex surgery that could allow her body to circulate oxygenated blood without fully relying on the left side of her heart.
The road ahead felt long and uncertain. But in the middle of that fear, Lily showed us something extraordinary. She fought. Quietly. Bravely. With a strength that seemed impossible for someone so small.
The Hidden Battle: Feeding, Guilt, and a Mother’s Heart
One of the most painful parts of this journey is looking back at the weeks before Lily’s diagnosis. The months of worry. The nights of second-guessing. The feeling deep in my chest that something wasn’t right—and the heartbreak of not having answers.
Because of those early weeks, Lily developed a severe feeding aversion. Feeding became something she associated with distress and discomfort. Eventually, she had to be fed through a nasogastric tube, something she will likely need until she is at least one year old.
As a mother, there is a special kind of guilt that comes with not being able to comfort or fix your child’s pain. I remember feeling helpless, watching the scale numbers, counting every milliliter of milk, and wondering what I was doing wrong. I carried a weight that no one could see—a quiet fear that I had failed her.
But the truth is, Lily was never weak. And neither were we. We were doing the best we could with the information we had. And Lily, even then, was showing us what resilience looks like.
A Miracle in Progress: Watching Lily Thrive
Today, at nine months old, Lily is a different baby. Once at the 0.4th centile for weight, she is now thriving at the 75th centile. Her heart is currently functioning “normally,” and every day feels like a gift we refuse to take for granted.
She is happy. Curious. Cheeky. Full of personality and light. She laughs, explores, and reaches milestones we once feared she might never reach. Each small achievement feels like a miracle in motion.
One particularly emotional milestone was Lily starting nursery. Watching the staff learn how to tube-feed her was both heartbreaking and beautiful. It meant trusting others with her care. It meant allowing her to be part of the world, despite her medical needs. It meant letting her be a child—not just a patient.
The Power of Community and Gratitude
We would not be where we are today without the incredible medical professionals who have walked this journey with us. The doctors, nurses, and specialists who treated Lily not just as a case—but as a precious little girl—have changed our lives forever.
Beyond the hospital walls, we found comfort in the heart community. Through organizations like Tiny Tickers, we connected with other families who understood the fear, the hope, and the emotional weight of congenital heart disease. Knowing we were not alone made the darkest days more bearable.
To every heart family, every nurse who held Lily’s hand, every doctor who fought for her, and every stranger who offered kindness—we carry your support in our hearts every day.
A Future Written in Hope
Lily’s story is not just one of medical challenges. It is a story of courage, of love that refuses to give up, and of a little girl who taught her parents what true strength looks like before she could even walk.
We don’t know exactly what the future holds. There will be more appointments. More uncertainty. Possibly more surgeries. But what we do know is this: Lily has already shown us that miracles don’t always arrive with fanfare. Sometimes, they arrive in the form of a smile after surgery. A laugh in a hospital room. A tiny heartbeat that refuses to quit.
To any parent walking a similar path, please know this—you are not alone. There is strength in community. There is hope even in the hardest moments. And there is incredible power in love that refuses to let fear have the final word.
Lily’s journey continues. And with every step, every breath, and every beat of her brave little heart, she reminds us that even in the face of impossible odds, love can carry us forward.
This is not just her story. It is a story of triumph. Of resilience. Of everyday miracles. And of a little girl whose heart has already changed the world of everyone who knows her.