What began as a routine 20-week ultrasound became the day that changed everything.
Herle’s parents walked into the appointment expecting grainy images, gentle smiles from the technician, and reassurance that everything was progressing beautifully. Instead, there was silence. A pause. A shift in the room’s energy. Then came the words no parent is prepared to hear: “Your baby has Congenital Diaphragmatic Hernia.”
A Diagnosis That Shook Their World
Congenital Diaphragmatic Hernia (CDH) is a rare and life-threatening birth defect in which a hole in the diaphragm allows abdominal organs to move into the chest cavity. This prevents the lungs from developing properly and can lead to severe pulmonary hypertension. In Herle’s case, the diagnosis was devastatingly severe. Her liver, stomach, and intestines had shifted upward, compressing her tiny lungs. Her heart had been pushed to the right side of her chest.
Doctors delivered the prognosis bluntly: survival odds were low. Termination of the pregnancy was recommended.
But for Herle’s parents, there was no debate. No hesitation. No surrender.
They chose to fight.
Finding Hope in the Darkness
The days that followed were filled with emotional chaos—grief, fear, and uncertainty wrapped tightly around every thought. How do you prepare for a future that doctors say may never come? How do you hold hope when statistics feel heavier than dreams?
In the midst of despair, they found a lifeline: a global support community of families who had faced CDH. Through shared stories—some heartbreaking, others triumphant—they discovered something medicine alone could not offer: possibility.
That possibility led them across the world.
A Bold Decision: Seeking the Best Chance at Survival
After extensive research and countless conversations, they connected with Dr. David Kays, a renowned CDH specialist at Johns Hopkins All Children’s Hospital. Known for handling some of the most complex CDH cases, Dr. Kays brought something they hadn’t felt in weeks: optimism.
While acknowledging the severity of Herle’s condition, he believed she had a real chance. He estimated her survival odds at 90% under his team’s care—a staggering contrast to the bleak outlook they had first received.
The decision was immediate. They would relocate to the United States.
In January 2023, they sold their home, left their jobs, packed their lives into suitcases, and moved to St. Petersburg, Florida. They stayed near the hospital, preparing not just for a birth—but for a battle.
The Day She Arrived
On March 13, 2023, at 38 weeks and one day, Herle was born via C-section, weighing 7 pounds, 6 ounces.
There was no time for cuddles. No quiet bonding moment.
She was immediately intubated and rushed to the neonatal intensive care unit (NICU). Within three hours, Herle was placed on ECMO (Extracorporeal Membrane Oxygenation), a heart-lung bypass machine that would breathe and pump blood for her fragile body.
Seeing their newborn connected to life-sustaining machinery was every parent’s nightmare made real.
But the true fight was only beginning.
A Critical Turning Point
Herle’s pulmonary hypertension was relentless. Despite ECMO support, her oxygen levels struggled. Her condition plateaued. Doctors warned that without surgical intervention, survival was unlikely.
Operating on a baby while on ECMO is extraordinarily complex and risky. But it was her only chance.
Her parents signed the consent forms with trembling hands and unbreakable faith.
Dr. Kays and his team performed the diaphragm repair surgery while Herle remained on ECMO—a high-stakes procedure requiring surgical precision and unwavering courage. The operation was successful. By repositioning her organs and closing the diaphragmatic defect, her lungs finally had space to expand.
Slowly—almost imperceptibly at first—her numbers improved.
Two days later, she was weaned off ECMO.
It was the first real sign that the tide was turning.
Three Months of Relentless Resilience
Herle’s NICU stay lasted three long months. During that time, she endured six surgeries, including ECMO cannula placement, hernia repair, and abdominal closure. Each procedure carried risks. Each day brought uncertainty.
The first two months were the hardest. Progress was fragile. Stability was fleeting. But Herle fought—quietly, fiercely, consistently.
Her parents lived in a state of suspended breath, celebrating every small victory: stable oxygen levels, reduced ventilator settings, the first time she opened her eyes longer than a few seconds.
And then came the moment they barely dared to imagine.
She was discharged.
Bringing a Warrior Home
Walking out of the hospital with their daughter in their arms felt surreal. The machines, the alarms, the sterile NICU corridors—all replaced by sunlight and fresh air.
Herle came home with medical equipment, including a G-tube for feeding. Recovery didn’t end at discharge. She continued to face challenges, including speech delays, cognitive delays, and feeding difficulties.
But compared to where they began, these challenges felt like mountains they could climb.
Today, Herle is a thriving one-year-old—curious, joyful, and full of personality. Her laughter carries the echo of every battle she has won.
More Than a Medical Story
Herle’s journey is not just a story about advanced neonatal care or groundbreaking surgery. It is a story about parental love that refuses to yield. It is about crossing oceans for hope. It is about community support that transforms fear into courage.
CDH is rare. It is terrifying. But Herle’s life proves that statistics are not destiny.
Her story is a reminder that medicine evolves. That second opinions matter. That specialized expertise can change everything. And above all, that resilience often arrives in the smallest, most fragile forms.
A Message for Other Families Facing CDH
For parents who may be sitting in a quiet ultrasound room today, hearing the same words Herle’s parents once heard—this story is for you.
You are not alone.
There are doctors who specialize in CDH. There are communities who understand the sleepless nights and the constant beeping of monitors. There are children who have walked this path before and are now running, laughing, and living full lives.
Hope may feel distant in the beginning. But sometimes, hope is found in a second opinion, a bold decision, or the strength to believe in your child’s fight.
The Legacy of a Tiny Hero
Herle’s name now carries a deeper meaning in her family. It stands for perseverance. For faith under fire. For courage measured not in size, but in spirit.
Her journey is proof that even when the odds seem insurmountable, love can fuel impossible strength.
And sometimes, the smallest fighters teach us the biggest lessons:
Never give up.
Never underestimate resilience.
And always, always hold on to hope.