In October 2019, our lives changed forever in the most beautiful way imaginable. My husband Patrick and I received the news every expecting parent dreams of hearing—we were going to have our first child. A baby girl. Our hearts overflowed with joy as we pictured tiny fingers, soft lullabies, and a future filled with first steps, first words, and countless precious memories. We named her Scarlett, a name that would soon come to represent strength, fire, and a spirit far greater than her tiny body.
But our joy was soon met with a fear we never imagined.
At our 16-week ultrasound, the room grew quiet. The technician’s expression shifted, and moments later, our world shattered. We were told Scarlett had been diagnosed with congenital diaphragmatic hernia (CDH)—a rare and life-threatening condition. The left side of her diaphragm had failed to form, allowing her stomach, spleen, intestines, and much of her liver to move into her chest. Her heart had been pushed to the far right side of her chest. Her lungs—especially her left—were severely underdeveloped.
The words felt unreal. The doctors gently explained that Scarlett’s chances of survival after birth were less than 20%.
We were devastated.
How do you grieve for a child who is still growing inside you? How do you prepare to say goodbye to someone you haven’t even had the chance to hold?
Yet even in that moment of crushing heartbreak, a small but powerful flame of hope ignited within us. Scarlett was alive. She was fighting. And as her parents, we would fight with her—every single step of the way.
A Pregnancy Defined by Faith and Fear
The months that followed were filled with hospital visits, endless scans, and a constant mix of hope and dread. I underwent 27 ultrasounds, multiple weekly non-stress tests, two fetal MRIs, and a fetal echocardiogram. We met with specialists who explained the full spectrum of CDH severity. Scarlett’s case, they said, was among the most severe.
Still, we refused to surrender to fear.
After consulting with multiple hospitals, we made one of the hardest decisions of our lives. We left our home in Knoxville, Tennessee, and relocated to Cincinnati, Ohio, to be closer to one of the top pediatric hospitals in the country. We uprooted our lives for one reason and one reason only: to give Scarlett every possible chance.
A Birth Surrounded by a Team of Heroes
The day Scarlett was born, more than 30 doctors and nurses filled the operating room. Her delivery was planned with military-like precision. She was born via C-section and immediately underwent an EXIT to airway procedure, meaning she was intubated and placed on a ventilator before she was fully delivered.
There was no cry. No moment of holding her against my chest.
Instead, there were machines, alarms, and a team of professionals racing to save our daughter’s life.
Scarlett was rushed to the NICU, where her fight truly began.
Just 18 hours after birth, Scarlett went into respiratory failure. She was placed on ECMO, a life-support machine that would oxygenate her blood when her lungs could not. The doctors initially believed she might need ECMO for only a few days.
Days turned into weeks.
Scarlett developed severe pulmonary hypertension. Three attempts to remove her from ECMO failed. After six weeks, doctors told us something no parent should ever hear: they did not believe Scarlett would ever be strong enough to live without the machine.
Our hearts broke.
But Scarlett was not done fighting.
A Last Hope and a Leap of Faith
In desperation, I searched for any possible alternative. That’s when I discovered Dr. Kays at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida. After reviewing Scarlett’s case, he agreed to take her on—though he was honest. Scarlett was extremely sick. He could not promise a miracle. But he promised to try.
Transporting a baby on ECMO is extraordinarily risky. Still, we knew this was Scarlett’s last chance.
Within 24 hours, insurance approval came through. The next day, Dr. Kays and his team flew to Cincinnati to transport Scarlett. Because of space and safety limitations, Patrick and I could not be on the plane.
Letting our baby fly away without us was one of the hardest moments of our lives.
We drove 14 hours straight to Florida, praying every mile that our daughter would survive the journey.
67 Days on ECMO and a Miracle Unfolds
Scarlett spent another 25 days on ECMO in Florida. Then, on August 9, 2020, after a total of 67 days on ECMO, the impossible happened.
Scarlett was successfully weaned off.
It felt like a miracle.
For the first time, we allowed ourselves to truly breathe.
On August 17, after months of waiting, we finally held our daughter in our arms. The weight of her, the warmth of her skin, the simple miracle of touch—it was everything. After so much fear and uncertainty, that moment felt like heaven on earth.
Setbacks, Surgeries, and Unyielding Strength
Scarlett’s journey, however, was far from over.
She struggled with feeding and required a G-tube and Nissen fundoplication. She developed superior vena cava (SVC) stenosis, requiring a stent. Then came one of the scariest chapters of all—sepsis and septic shock. Scarlett became unresponsive. Fluid built up in her brain. She required a VP shunt and a revision surgery.
At one point, she lost movement in her arms and legs. We were told she might never regain function.
But Scarlett proved everyone wrong.
A Warrior Who Refused to Quit
Slowly, day by day, Scarlett fought her way back. She was extubated again. Her breathing support was gradually reduced. She began to move. She began to respond. She began to live—not just survive, but truly live.
On March 30, 2021, after 301 days in the hospital, we brought Scarlett home.
It was the most beautiful homecoming we could have ever imagined.
A Life That Inspires
Today, Scarlett continues to receive physical, occupational, and speech therapy. She still faces challenges, but she faces them with a strength that humbles everyone who meets her. She is living proof that statistics do not define destiny. That hope is stronger than fear. That love can move mountains.
We are forever grateful to Dr. Kays, Dr. Stone, and the entire CDH team at Johns Hopkins All Children’s Hospital. They saw what others could not. They believed when belief was all we had left.
Scarlett is not just our daughter.
She is our miracle.
She is our teacher.
She is our reminder that even the smallest fighters can carry the greatest strength.
Her journey is a testament to courage, faith, and the unbreakable power of hope. And as her parents, we are endlessly honored to walk beside her, every step of the way.
The future is bright—because Scarlett is in it.