It’s incredibly difficult to find the right words to describe the emotions we’re feeling right now.
For days, I’ve tried to put my thoughts into words, but the flood of emotions has been overwhelming. How do you capture love, hope, fear, grief, and joy all at once? And yet, as I reflect on everything we’ve experienced, I feel compelled to share our story.
It began in a small conference room with our maternal-fetal medicine doctor. Tyler and I sat there, hearts pounding, hands intertwined, as we waited anxiously for the ultrasound results.
For the first time, we saw her face.
Our baby girl.
Even at this early stage, her features were clear. Her tiny nose, her little chin, her eyes—but most of all, her smile. It was wide, innocent, and full of life. Already, she radiated something we couldn’t quite describe.
My heart raced. Excitement mingled with fear.
What would the world see in her?
Would they see what we saw—beauty, hope, love? Or would they see something else?
I remember how hard it was to even share the ultrasound images. I wanted to show people this glimpse of our daughter, but I also wanted to protect her from judgment, from the unknown, from a world that might not understand her uniqueness.
And then the day finally came.
She was born.
And the moment she was placed in my arms, everything changed.
All the fears that had haunted me in that conference room disappeared instantly.
All that remained was love—pure, unshakable, overwhelming love.
She smiled.
And in that smile, I saw her entire soul.
Those two tiny teeth, peeking shyly from her lips, became symbols of her personality, her joy, her resilience. They greeted us every morning and every night, a reminder that life, even at its most fragile, is full of beauty.
We treasured every moment. Every expression. Every small sound. Every breath.
We celebrated her smiles the way parents celebrate first steps or first words. But this smile—this tiny glimpse of happiness—meant something deeper. It meant life. It meant hope.
And then Wednesday arrived.
The familiar smile that had brought us so much joy was gone.
The two little teeth that had peeked out from her grin were now tucked behind her lip, hidden as part of her new reality.
I remember staring at her face, feeling the shift like a tidal wave of emotion.
How could something so small—the curve of a lip, the flash of teeth—feel so monumental?
We began to adjust to the change.
We learned to notice the subtle differences: how her lips moved now, the way her smile stretched across her cheeks, the tiny ways it expressed itself in laughter and joy.
And yet, the memories of her old smile lingered.
I found myself longing for it, grieving for it even as I watched her adapt to the new one.
It’s incredible how something as simple as a smile can hold so much meaning.
It was part of who she was, part of our bond with her.
And yet, it had to change.
The surgery she underwent was necessary. We knew it was the right decision.
Every step of this journey has been about her future—her health, her well-being, and her happiness.
And the doctors who made it possible were nothing short of miraculous.
Skilled, patient, and precise, they worked tirelessly to ensure she would have the best possible outcome.
But no matter how prepared we were, part of me wished we could hold on to that wide smile forever.
I would have, if I could.
I would have kept it for every morning, every night, every day in between.
And yet, life moves forward.
Her new smile is different, yes, but it is just as beautiful.
It is hers.
And that makes it perfect.
Every morning, I watch her greet us with it.
Every night, it is the last thing we see before sleep.
It may not be as wide as before, thanks to Botox that helps her lip heal and avoid stretching too far, but it is growing, evolving, and adapting—just as she is.
Every day, I fall more in love with it, even while I feel a small tug in my heart for the old one.
Change is never easy, especially when it touches something so personal and intimate.
A child’s face, a child’s smile, a child’s joy—these are not things we can protect from time or circumstance.
But what we can do is embrace the change, celebrate growth, and nurture happiness in every form it comes.
And that is exactly what we are doing.
We are learning to love her new smile just as much as we loved the first.
We are learning to see it as a sign of her resilience, her courage, her ability to face the world and grow beyond the obstacles life has put in her path.
Her smile, new as it is, is a testament to her strength.
To the little person she is becoming.
To the challenges she has already faced.
To the future that lies ahead.
Every small movement of her lips, every flicker of her eyes, every laugh she shares is a reminder of how much she has already overcome.
How much she continues to overcome.
Our family has spent countless hours reflecting on the journey that brought us here.
From the ultrasound room to her birth, from our nervous excitement to holding her in our arms for the first time, to now, adjusting to a new smile—every step has been profound.
We have learned about fear.
We have learned about hope.
We have learned about the strength of love.
We have learned about the way small changes can feel monumental, and yet, how love remains constant.
Her new smile is a bridge.
A bridge from what was to what will be.
It is a symbol of healing, progress, and the incredible journey we’ve all been on together.
And while I may sometimes grieve the old smile, I also celebrate the new one.
I celebrate her courage.
I celebrate her growth.
I celebrate the way she faces each day with a spirit that is unstoppable.
The surgery she underwent was not just a medical intervention—it was a step toward a life filled with joy, laughter, and opportunity.
And every day since has been about adjusting, learning, and embracing this new chapter.
We have watched her as she grows into it, as she learns to move her lips in ways that feel natural, as she expresses joy through her new smile.
And slowly, we realize it is becoming hers—not ours, not something we long for, but something she owns fully.
It is her smile.
And it is perfect.
We have learned that love does not cling to the past.
Love does not measure beauty by what was.
Love embraces the present.
It cherishes growth.
It celebrates change.
And through it all, we have learned that a child’s beauty is not in a single feature, a single expression, or a fleeting moment.
It is in their spirit.
It is in their joy.
It is in their ability to face change and still shine.
Her new smile may start small.
It may take time to stretch and grow.
But it is already perfect in its own way.
It is full of potential, full of hope, and full of the love that surrounds her every day.
We are grateful beyond words for the doctors, the nurses, and the technology that made this possible.
We are grateful for the opportunity to see her continue to grow, continue to thrive, and continue to teach us about resilience, courage, and love.
And so, here it is.
Our beautiful girl’s new smile.
A smile that is hers.
A smile that reflects everything she has overcome, and everything she has yet to experience.
A smile that reminds us daily of the power of love, family, and hope.
Change is hard.
Grief is natural.
But love endures.
Her smile, new as it is, is a reminder of that truth.
We will continue to love it.
We will continue to celebrate it.
And we will continue to celebrate her.
No matter what, she is our perfect, beautiful girl.
And her smile—whatever form it takes—will always be a symbol of joy, courage, and the endless possibilities of life. 💜
Ella’s Short Life, Endless Courage: A Baby Who Fought with Every Beat
Ella arrived into the world on 6th July 2021, a tiny bundle weighing 8 pounds 3 ounces.
Even before her birth, her journey had been mapped by scans and expert eyes. At 20 weeks, her heart defects were detected: tricuspid atresia, transposition of the great arteries (TGA), coarctation of the aorta, and a ventricular septal defect (VSD). Every term felt heavy, every syllable a reminder of the fight she would face from her very first breath.
Her parents, Leah and Joe, were filled with hope and fear in equal measure. They prepared themselves for a path no parent should ever have to walk, guided by the knowledge that modern medicine had a chance to save her tiny, fragile life.
At six days old, Ella underwent open-heart surgery. The operation was delicate, perilous, and crucial. Every moment in that operating theatre was a battle for survival. Her body was small, her heart fragile, yet she endured the procedure with remarkable strength.
The first weeks after surgery were filled with milestones that seemed monumental. Every breath she took, every heartbeat, every ounce gained was celebrated like a victory. Ella’s cheeky personality and mischievous smile emerged despite her fragile frame.
Leah and Joe watched her grow, breathe, and thrive. They treasured every cuddle, every coo, and every fleeting moment of normalcy. She was perfect, a little warrior wrapped in tiny limbs and a fierce spirit.
Then, in the blink of an eye, tragedy struck. On 23rd October 2021, just three and a half months old, Ella passed away.
The loss was sudden, crushing, and incomprehensible. She had been doing so well. One moment she was thriving, and the next, she was gone. The emptiness it left was a chasm that words cannot fully capture.
Grief is a wave—sometimes calm, sometimes overwhelming. For Leah and Joe, it hit unpredictably. One moment they could function, smile, or breathe, and the next, the memory of her tiny body, her blue-tinted lips, her delicate frame, would crash over them like a storm.
They cling to the three and a half months they were granted. Every memory, every laugh, every smile is preserved like a treasure. They remember her cheeky personality, her resilience, and the way she fought with every heartbeat.
Though their time with Ella was painfully short, her impact is lasting. She changed their lives, left them with an indelible mark, and showed them the courage even the tiniest of souls can hold.
Her story is also a stark reminder of the fragility of life, even in the presence of extraordinary medical intervention. Despite the best care, the brightest stars sometimes burn too briefly.
Leah and Joe reflect on how fast everything changed—from hope to relief to unimaginable loss. The hospital visits, surgeries, and recovery, all seemed like preparation for a life they hoped she would have. But life had other plans.
Every parent reading this can feel the intensity of their emotions. The panic in those first hours after birth, the desperate hope during surgery, the cautious optimism as she thrived post-operation, and the devastating heartbreak that followed—all of it is raw, unfiltered, and universal.
Ella’s journey highlights the incredible strength of infants born with complex heart defects. Even when survival is not guaranteed, their tiny bodies can endure monumental challenges. Their spirit, even in the face of tragedy, teaches lessons in courage and resilience that transcend words.
Leah and Joe have learned that grief does not follow a linear path. It surges and recedes, unpredictable and relentless. One moment they can laugh at a memory, and the next, they are brought to their knees by the absence of her presence.
They are grateful for the time they had. For the opportunity to see her smile, to hold her hand, to witness her fighting spirit. These memories are their solace, their anchor in the storm of loss.
Even in mourning, they celebrate her life. Every photograph, every small memento, is a testament to the vibrant, courageous soul she was. Ella’s short life was packed with more courage than most experience in a lifetime.
Her legacy extends beyond her family. She serves as a reminder to the world about the importance of prenatal detection, medical vigilance, and the relentless dedication of neonatal and cardiac specialists.
She also embodies the bittersweet reality of medical advances: even with the best care, the tiniest hearts can be fragile beyond imagining. Her story is both a celebration of survival and a mourning of potential lost.
For families navigating similar paths, Ella’s life is a mixture of inspiration and caution. It shows the possibilities that modern medicine offers, but also the sobering reality of congenital heart defects.
Leah and Joe find comfort in community and support networks. Knowing others have walked similar paths, that their grief is shared, that their memories are honored, brings solace. The heart community, they have found, is resilient, supportive, and vital.
Every day without Ella is a reminder of her absence. But every memory, every flash of her smile, is proof of the life she lived and the joy she brought, however fleeting.
Her journey is a powerful testament to the strength of tiny humans, the resilience of parents, and the incredible challenges faced by families navigating congenital heart conditions.
Even in loss, there is teaching. Ella’s story emphasizes advocacy, awareness, and the importance of early detection and intervention. Each story shared can save lives, prevent trauma, and offer hope.
Leah and Joe honor her by remembering, by sharing her story, and by supporting others. They carry her spirit forward, ensuring that even though her life was short, her influence endures.
Grief has reshaped them, yet it has not diminished their love or memory of their daughter. Ella’s life, though brief, radiated courage, teaching those who knew her about the extraordinary strength within the smallest of bodies.
Every heartbeat she took, every battle she fought, is a reminder that even the most fragile lives can leave a profound impact. Her story is not just of loss, but also of the indomitable spirit of a child who faced the impossible and shone brightly.
Leah and Joe continue to share her story, hoping to give solace and awareness to other families, showing that even in tragedy, there is connection, understanding, and the power of remembrance.
Ella’s presence lingers in memories, photographs, and hearts. She is an angel watching over her family, a guiding light, and a reminder that love transcends even the shortest of lifetimes.
Her journey underscores the importance of family, support, and the incredible skill of cardiac and PICU teams. Every nurse, doctor, and consultant played a role in giving her the chance she had, and their dedication is forever remembered.
Though Ella’s life was brief, it was impactful. Her courage inspires, her memory comforts, and her story teaches lessons about fragility, strength, and the preciousness of every heartbeat.
Leah and Joe embrace the happy moments they had—the cuddles, the smiles, the first coos—and carry them forward as a testament to the joy she brought. Each memory is a piece of her legacy.
Even as grief hits in waves, they find moments of light. Sharing her story, connecting with other parents, and honoring her life allows them to transform sorrow into meaning.
Ella’s life, though tragically short, shines as a beacon for families navigating congenital heart conditions. It reminds the world that every baby, no matter how fragile, has immense strength, and every parent’s love is a force of resilience.
In the night sky, Leah and Joe look for the brightest star, their Ella, and find comfort knowing her spirit watches over them.
Her story remains a mixture of sorrow and inspiration, teaching all who hear it that love, courage, and memory endure beyond even the most painful of losses.
Ella’s short life was a battle fought with every heartbeat, every breath, and every ounce of her tiny body. She is a hero, a daughter, and a reminder that even the briefest lives can leave the deepest marks.
Her parents carry her in their hearts forever, honoring her memory, teaching others about congenital heart conditions, and cherishing every moment they had with their brave little angel.
