In October 2019, my husband Patrick and I received the news we had been waiting for—we were expecting our first child, a baby girl. We were overjoyed and couldn’t wait to start this new chapter of our lives. Little did we know, our excitement would soon be overshadowed by the overwhelming fear of an unexpected diagnosis that would alter the course of our pregnancy and our lives forever.
At our 16-week ultrasound, we were blindsided by devastating news. We learned that our daughter, whom we had already named Scarlett, had been diagnosed with congenital diaphragmatic hernia (CDH). The left side of her diaphragm had failed to form, causing her stomach, spleen, intestines, and most of her liver to shift into her chest. Her heart had been pushed all the way over to her right chest wall, and both of her lungs were severely underdeveloped—her left lung was nearly nonexistent, and her right lung was equally small. The doctors informed us that Scarlett’s chances of surviving after birth were less than 20%. We were crushed. But amid the heartbreak, there was still a glimmer of hope—we knew that Scarlett was a fighter, and we were determined to give her every chance to survive.
Over the course of my pregnancy, Scarlett was closely monitored. I underwent 27 ultrasounds, two non-stress tests each week, two fetal MRIs, and a fetal echocardiogram. We met with numerous specialists who carefully explained that CDH has a range of severity. Unfortunately, Scarlett’s case was on the severe end of that spectrum. The reality of her condition was grim, but we didn’t give up. After consulting with several hospitals, we made the difficult decision to leave our home in Knoxville, Tennessee, and relocate to Cincinnati, Ohio, where we could get the specialized care Scarlett needed.
On the day of Scarlett’s birth, we arrived at Cincinnati Children’s Hospital with a team of more than 30 doctors and nurses ready to provide immediate care. Scarlett was delivered via a planned C-section, and she was intubated and placed on a ventilator before she was even fully removed from my uterus. This procedure, known as an EXIT to airway, allowed the medical team to ensure Scarlett’s airway was secure before continuing with her delivery. Her birth was a blur of activity as doctors and nurses worked tirelessly to stabilize her, and as soon as she was born, she was whisked away to the NICU for further care.
Only 18 hours after her birth, Scarlett went into respiratory failure. She was placed on ECMO, a life-support machine designed to oxygenate her blood when her lungs were too weak to do so. Initially, the doctors were hopeful that she would only need ECMO for a short time, perhaps less than a week. But as the days passed, it became clear that Scarlett’s condition was far more complicated than anyone had anticipated. She had developed severe pulmonary hypertension, and despite all efforts, she wasn’t responding to treatment. The doctors explained that, after six weeks on ECMO and three failed attempts to remove the machine, they didn’t think Scarlett would ever be strong enough to survive without it.
It was devastating to hear those words. The thought of losing our little girl was unbearable. She had been fighting for her life since the moment she was born, and it seemed as though we were running out of options. But Scarlett wasn’t ready to give up, and neither were we. In desperation, I began researching and discovered Dr. Kays at Johns Hopkins All Children’s Hospital in St. Petersburg, Florida. After reviewing Scarlett’s case, Dr. Kays agreed to accept her as a patient, though he was honest with us about the severity of her condition. He told us that Scarlett was extremely sick and that he wasn’t sure if he would be able to help her, but he was willing to try.
Transporting a patient on ECMO is an incredibly risky procedure, but we knew it was the only chance Scarlett had left. Within 24 hours, we received insurance approval for an air transfer, and the following day, Dr. Kays and his team flew to Cincinnati to transport Scarlett to Florida. Due to the size of the plane and the equipment required, Patrick and I were unable to join her on the flight. It was one of the hardest things we’ve ever had to do, but we knew it was necessary to get her to where she needed to be. We immediately began the 14-hour drive to St. Petersburg, and we arrived the following day, eager to be reunited with our daughter.
Scarlett spent another 25 days on ECMO after arriving at Johns Hopkins All Children’s Hospital. But on August 9, 2020, after a total of 67 days on ECMO, Scarlett was finally weaned off the machine. It was a huge milestone, and we were filled with hope. The next day, she underwent surgery to remove the cannulas from her neck, and on August 17, we were finally able to hold her in our arms for the first time. It was a moment I will never forget—the feeling of having my daughter in my arms after everything she had been through was indescribable.
On August 24, Scarlett was extubated to CPAP for the first time, and we were thrilled by her progress. But just a few days later, Scarlett’s condition took a turn for the worse. She began retaining CO2 and had to be reintubated. It was a setback, but we had seen her fight before, and we knew she could do it again.
By this point, Scarlett had never had food in her stomach. She had been receiving all of her nutrition through IV TPN. The doctors decided to place a feeding tube in her nose so she could begin receiving breast milk. Unfortunately, she couldn’t tolerate even the smallest amount of food. After discussions with Dr. Kays, it was decided that Scarlett would need a G-tube, along with a Nissen fundoplication to prevent reflux. On September 28, Scarlett had her G-tube surgery, and things began to improve. But shortly afterward, we noticed swelling in her face and neck, which was eventually diagnosed as stenosis of her superior vena cava, a complication from her time on ECMO.
Scarlett was transferred to Orlando, Florida, where she underwent surgery to place a stent in her SVC. The surgery was successful, and just two days later, she was extubated again to CPAP. But our journey wasn’t over yet. On November 9, Scarlett’s heart rate began to climb, and she became unresponsive. Doctors later discovered that she had developed sepsis and was in septic shock. Scarlett remained in a comatose state for several days, and her doctors were unsure whether she would survive. She was reintubated and underwent multiple tests, including an EEG and a CT scan, which revealed significant fluid on her brain. On November 19, Scarlett had a VP shunt placed to drain the excess fluid, but complications arose, requiring another surgery to revise the shunt.
The next few months were filled with ups and downs. Scarlett had lost the use of her arms and legs, and it was unclear whether she would regain movement. But Scarlett is a fighter, and on December 10, 2020, she was successfully extubated to CPAP for the third time. Over the next several months, Scarlett’s progress was nothing short of miraculous. Her CPAP settings were gradually weaned, and on February 15, 2021, she transitioned to a low-flow nasal cannula. Eventually, it was decided that Scarlett would go home on CPAP, allowing her lungs more time to develop at home.
On March 30, 2021, after 301 days in the hospital, Scarlett was finally able to go home. Since then, she has continued to amaze us with her strength and determination. Scarlett is now enrolled in physical therapy, occupational therapy, and speech therapy, and she continues to make progress every day. Though she still faces challenges, she is thriving, and we are so incredibly proud of her.
We are eternally grateful to Dr. Kays, Dr. Stone, and the entire CDH team at Johns Hopkins All Children’s Hospital. They never gave up on Scarlett, even when the odds were stacked against her. They saw her strength when others had lost hope, and because of them, Scarlett is alive today.
Scarlett’s journey has been long and difficult, but she is a living testament to the power of hope, love, and perseverance. We are so blessed to be her parents, and we cannot wait to see what the future holds for our amazing little girl.
