Elisa’s Story - Congenital Diaphragmatic Hernia (CDH)
"It's going to be okay, I promise," Payne said. His eyes were red and filled with tears. I collapsed into his chest as it all hit me. My husband and I cried and held each other on our living room sofa for a few minutes, wondering about our baby's future. I knew this was a big moment for our family, a moment we would never forget, a moment we needed to surrender to God. I embraced every second and detail of the moment-- the pain, the helplessness, the sadness. "Turn to God, Julia," I heard in my heart. "Jesus knows your pain and suffering. Lean on Him." I sat on the couch a bit longer, crying with Payne. We were both wrapped in the arms of God, Jesus Christ sat by us weeping, and Mother Mary held our hands, reminding us to "Do whatever He tells you (John 2:5). "
On February 22nd, 2019, we discovered our baby had a left-sided congenital diaphragmatic hernia (CDH), a birth defect that affects approximately 1 in 2500 babies. A hole from an underdeveloped diaphragm allowed our baby's stomach, intestines, and spleen to grow in her chest cavity, creating little room for her lungs to grow.
On the day of our 20-week anatomy scan, we returned to the hospital for a follow-up ultrasound with a specialist. It was a grim appointment, and we learned that we wouldn't know the fate of our baby until she arrived (which was likely a 10-60% survival rate at the hospital we were originally delivering). Additionally, the doctor reminded us that we had only 2 weeks left to terminate in the state of Texas. In shock, we responded that it was not an option for our family. We knew we would do whatever it took to give our baby the best chance at life. After a few google searches, my husband suggested that we leave out of state for the baby's birth. Initially, I thought it would be impossible. How could we afford this? Would I lose my job? Would we both lose our jobs? Where would we live? It was then that we decided to take a big deep breath and take one step at a time to figure out how to make this possible. We stumbled upon Tiny Hero's website and saw story after story of babies who won their battle with CDH, and we found hope!
One week later, we were on the phone with the best surgeon in the nation (if not the world) for CDH patients, Dr. David Kays of Johns Hopkins All Children's Hospital (JHACH) in St. Petersburg, FL. The first question he asked us was, "What is your baby's name?" He listened to our story, one that is so similar among CDH parents. During the phone call, Dr. Kays gave our baby a 95% chance of survival under his care based on our local specialist's measurements and the genetic test results.
We did our research and took one step at a time to figure out how to make our relocation to Florida possible. Work and money (obviously) being the big obstacles. We found refuge in many organizations offering help financially or even emotionally throughout the entire process. At 34 weeks, we relocated from Dallas, TX to St. Petersburg, FL, to wait for the arrival of our girl, Elisa Therese Nowak. We stayed at the Ronald McDonald House, which was a short walk from the hospital. Elisa was born on July 1st, 2019, and her diaphragmatic repair was performed on July 3rd, 2019. She recovered rapidly from her diaphragmatic repair, and she weaned off wall oxygen at an impressive rate. We initially thought we would be out of the hospital by the end of the month! This expectation changed quickly when Elisa began to struggle with her feeds and severe reflux. At one-month-old, Elisa needed a second surgery to fix a narrowing in her small intestine to assist her stomach emptying. We spent another month and a half working with Elisa on feeds and considering a third surgery (Nissen fundoplication & G-tube). On day 73, we left JHACH, narrowly avoiding a third surgery. We strolled Elisa out of the hospital, and she felt the sun on her face for the first time on September 11th, 2019.
Elisa is 14 months old now and had a follow-up visit in July with her favorite doctor, Dr. Kays. We were close to having the Nissen fundoplication and G-tube surgery, but ultimately, we decided to give Elisa one more year to see improvements with her reflux. Despite challenges with feedings, Elisa is in the 12th percentile and has met every single developmental milestone! She is such a happy baby and loves to play with her friends at daycare!
There were many hard days, but Elisa's life was and still is 100% worth the fight. Our pregnancy and first year with Elisa have been anything but ordinary, but we wouldn't have it any other way. We leaned into our faith and allowed God to guide our lives and trust that His plan was more beautiful than we could ever imagine—and it was!