In 2019, my wife, Mindy, and I received the joyous news that we were expecting our third child. After two wonderful boys, we were excited to be adding a little girl to our family. The day we walked into the 20-week ultrasound appointment, we couldn’t contain our excitement. We had a strong feeling it was a girl, and when the technician confirmed it, we were elated. But what followed was a moment that would forever change the course of our lives.
After a few minutes, the technician seemed to get unusually quiet, and soon we were told that we needed to speak with the doctor. Anxiety started to build as we waited. The doctor entered the room and dropped a bombshell: our daughter had Congenital Diaphragmatic Hernia (CDH). I had never heard of it, and the news left us in shock. The doctor explained that CDH is a rare birth defect where the diaphragm doesn’t form properly, allowing the organs to shift into the chest and impair lung development. Our baby girl’s prognosis was grim: a 50% chance of survival, and a 40% chance that she would need ECMO, a life-support machine, after birth. We were told that if we wanted to terminate, we needed to decide quickly, as the law in California limited our options based on how far along I was in the pregnancy.
Devastated doesn’t even begin to describe how we felt. We couldn’t imagine our lives without this little girl we had already begun to love. In a moment of desperation, I turned to the internet, searching for any shred of hope. That’s when I stumbled upon Tiny Hero, a support group of families who had walked the path of CDH. I reached out to one of the fathers, Joshua Patterson, whose daughter had faced CDH and survived. Joshua’s words became the lifeline we desperately needed. He told us about Dr. David Kays at Johns Hopkins All Children’s Hospital, a pediatric surgeon who had changed the outcomes for many children born with CDH. Joshua spoke highly of Dr. Kays and encouraged us to reach out to him.
With nothing left to lose, Mindy and I decided to contact Dr. Kays. We sent over all of our daughter’s medical records and anxiously awaited his response. When Dr. Kays called, he explained the severity of our daughter’s condition but offered us a glimmer of hope. He told us that if he were to take over her care, she had an 85% chance of survival. The 85% figure stunned us. It was the first time in weeks we felt a flicker of hope. Dr. Kays’ confidence gave us the strength we needed to continue fighting for our daughter.
With no time to waste, we made the difficult decision to relocate to St. Petersburg, Florida. At 35 weeks pregnant, Mindy left our home and family behind to begin preparations for the birth of our daughter. For six long months, she lived away from me and our two boys, communicating through FaceTime as I stayed behind, trying to keep life as normal as possible. We knew it was a sacrifice we had to make, and though it was hard, we held on to the belief that it was the best decision for our baby.
On May 26th, 2020, our daughter, Arabella, was born. The birth was intense, and though we were terrified, there was one thing that stood out—Arabella cried. That sound was a gift, and we later learned that it was her way of announcing that she was ready to fight. But that was only the beginning. Arabella was immediately placed on ECMO, a life-support machine designed to temporarily take over the function of her heart and lungs. It was a terrifying moment, but we knew it was necessary for her survival.
Dr. Kays and his team went to work immediately, performing a complex surgery to repair the hole in Arabella’s diaphragm. She had only 2% of her diaphragm, and her organs—her liver, stomach, intestines, and kidneys—were all crowding her chest, pressing against her heart and preventing her lungs from developing. The surgery was delicate, and although the road ahead was uncertain, we were filled with hope knowing she was in the hands of one of the best pediatric surgeons in the world.
After the surgery, Arabella faced an uphill battle. She was on ECMO for 14 days, and every day felt like a new challenge. There were moments when it seemed like we might lose her, but Arabella never gave up. She showed us what true resilience looked like. After 14 days, she was stable enough to be removed from ECMO and transferred to the NICU, where she continued to fight. The journey was still long, but with each passing day, Arabella made progress. She was extubated at 15 days old, and we finally got to hear her cry again, the sound of life and strength. A few days later, we were able to hold her for the first time, a moment we will cherish forever.
As Arabella grew stronger, we focused on the final hurdle: feeding. She struggled with feeding at first, but after hard work and support from her medical team, she eventually began breastfeeding and gained the strength she needed. By July 20th, 2020, Arabella had met her feeding goals and was finally discharged from the hospital. After nearly two months in the NICU, we could finally bring our little girl home.
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At home, Arabella continued to thrive. Though she faced challenges with her reflux and continued therapy, she was ahead of schedule in her developmental milestones. By 15 months, Arabella had graduated from her feeding tube and no longer needed pulmonary hypertension medication. She had her third surgery to replace a patch from her initial repair, and once again, she recovered quickly. Today, Arabella is a happy, healthy, and thriving toddler with an incredibly big personality. She loves to explore, play, and interact with everyone she meets.
Arabella’s journey has been nothing short of miraculous. We are forever grateful to Dr. Kays, the entire medical team, and the Tiny Hero community for their unwavering support. Arabella’s story is a testament to the power of love, faith, and resilience. She has proven that no matter how dire the situation, there is always hope.
We are so proud of our little warrior, and we will continue to fight for her, support her, and cherish every moment with her. Arabella has shown us that miracles do happen, and with the right care, determination, and hope, anything is possible.
To all the families facing CDH, please know that you are not alone. There is hope, and there is always a chance for your child to thrive. Keep fighting, keep believing, and never give up. Arabella’s story is proof that anything is possible.
