A Diagnosis That Stops Time

The moment a parent hears the words Congenital Diaphragmatic Hernia, the world seems to freeze.

Before that moment, pregnancy is filled with imagined lullabies, first smiles, and milestones waiting just beyond the horizon. But with a CDH diagnosis, those dreams are suddenly replaced by fear, medical terminology, and impossible questions. That was the reality the day we learned our baby girl, Empress, had Congenital Diaphragmatic Hernia.

CDH meant there was a hole in her diaphragm, allowing abdominal organs to push into her chest. The space meant for her lungs had been stolen before she was even born. Her lungs were underdeveloped, her heart was under pressure, and her tiny body was already fighting for survival.

From that moment on, nothing felt certain.

When the Odds Multiply

At just 16 weeks pregnant, doctors confirmed the severity of Empress’s condition. But the news did not stop there. Further testing revealed an additional, devastating complication: a Type 4 Laryngeal Cleft, a rare condition in which the airway and esophagus form a single channel.

This combination placed her survival in serious doubt.

Every appointment became heavier than the last. Ultrasounds and fetal MRIs were no longer moments of joy but moments of restrained breath. Each heartbeat brought relief. Each movement inside the womb felt like a quiet declaration of strength.

Despite the grim statistics, giving up was never an option.

Searching for the Right Fight

We were referred to Children’s Hospital Colorado for advanced imaging and consultation, but soon realized Empress would need the highest level of specialized care. That path led us across the country to St. Petersburg, Florida, under the care of Dr. David Kays, one of the world’s leading experts in Congenital Diaphragmatic Hernia.

As the final weeks of pregnancy approached, fear transformed. I was no longer worried about labor or delivery. I was terrified of whether my daughter would survive birth at all.

Hope became something fragile—but necessary.

Born Into Battle

On May 24th, one day shy of 34 weeks, Empress entered the world weighing 5 pounds, 6 ounces. She was premature, small, and critically fragile—but unmistakably strong.

There was no pause for celebration. Within hours of birth, Empress was taken into surgery to repair her diaphragm. What surgeons discovered was even more severe than imaging had predicted. Her organs had shifted dramatically, making the procedure far more complex.

Still, the surgery was successful.

But it was only the beginning.

Life Supported by Machines

Just three days later, Empress’s fragile airway failed to support her breathing. Doctors made the urgent decision to place her on ECMO, a heart-lung bypass machine that would take over the work her body could not yet manage.

Watching your newborn rely on machines to live changes something deep inside you. Every monitor beep carries weight. Every silence feels dangerous. Survival is measured second by second.

On June 4th, Empress underwent another life-saving surgery to separate her airway from her esophagus and place a feeding G-tube. The procedure was delicate, risky, and absolutely necessary.

That day marked a turning point.

Small Victories, Hard-Won Progress

Recovery did not follow a straight line.

Days blurred into weeks filled with ventilators, CPAP, and constant monitoring. Every breath was a victory. Every small response felt miraculous. On June 15th, Empress was successfully removed from ECMO—a milestone few believed possible just weeks earlier.

By July 13th, her breathing tube was removed. But another challenge emerged: tracheomalacia, a condition where the airway collapses during breathing or crying. Once again, surgery was required.

On August 26th, Empress underwent a tracheopexy to stabilize her airway.

Each surgery carried risk. Each recovery required patience. Yet through it all, Empress continued to fight.

Setbacks That Tested Everything

Just as progress seemed steady, a rhinovirus infection sent Empress back to the ICU for two more weeks. It was a harsh reminder that for medically fragile children, even common illnesses can be life-threatening.

Still, she endured.

She grew stronger. She responded to touch. She recognized voices. Slowly, her personality began to shine through the wires and machines—a quiet resilience that amazed everyone who cared for her.

Coming Home at Last

On November 8th, after months in the hospital, Empress finally came home.

Home felt different. Sacred. Every breath she took without assistance felt like a miracle unfolding in real time. Every smile became a celebration. Every peaceful moment carried gratitude.

Her first year required constant therapy, careful feeding, and ongoing medical supervision. But Empress didn’t just survive—she thrived.

A Birthday Once Thought Impossible

As her first birthday approached, the weight of the journey settled in. There were moments early on when that milestone felt unreachable. Yet there she was—one year old, surrounded by family, toys, and love.

Her eyes sparkled with life. Not untouched by struggle, but shaped by it.

The celebration was quiet but profound. It wasn’t just a birthday. It was a victory.

Gratitude, Hope, and the Road Ahead

Our gratitude for the medical teams who fought alongside Empress cannot be measured. Dr. Kays, Dr. Smithers, and the nurses who stood watch through long nights became more than caregivers—they became lifelines.

Empress’s journey is far from over. Future surgeries and therapies still lie ahead. But she has already proven something extraordinary.

She is capable.

To parents facing a devastating diagnosis: hold onto hope, even when it feels thin. Trust in your child’s strength. Empress is living proof that resilience, love, and determination can carry a tiny fighter through the impossible.

Her story is not just about survival. It is about faith, perseverance, and the quiet power of a child who refused to give up.

Empress, our miracle—may your life continue to grow brighter, stronger, and filled with wonder. Your journey reminds us all that even in the darkest moments, miracles are still possible.