Kaidence’s Story - Congenital Diaphragmatic Hernia (CDH)

In 2017, we found out we were pregnant with our second child, and we couldn’t have been more excited to add a little girl to our family and give our son a sister. In October, we were given her diagnosis. As with most (if not all) CDH families, we were offered and even encouraged to terminate. For us, this was not an option. My husband and I were told things no parent wants to hear, “IF she survives, she won’t have much quality of life;” “She won’t get to be a normal kid;” “This is a poor prognosis, are you sure you don’t want to terminate? You’re running out of time.” We had never been more sure of anything in our lives. That was until we met Dr. Kays.

In December, we arrived in St. Petersburg for our consultation and testing. We found she had her large and small intestines, stomach, and 25-30% of her liver in her chest. Dr. Kays told us he estimated she had about 17% lung volume and gave her a 90% chance of survival and a 75% chance of needing ECMO. We knew in that moment we would relocate.

February 5, we packed our bags and hit the road. In the first couple of weeks in St. Pete, we redid our testing and got a call from Joy telling us they needed to see us. My heart stopped.

In our next meeting, we found her spleen had decided to join the party and moved so far over to the right; it was now pushing into her right lung. Dr. Kays also found that her lung volume decreased by nearly half, from 17% to maybe 10%. He gave her an 85% chance of surviving and a 99% or higher of needing ECMO. He predicted she would be on ECMO within six hours of her birth.

March 1, 2018, arrived, and so did our Kaidence. We were one of the lucky sets of parents who heard a raspy cry. We were shocked (which we have since learned was her way of announcing she’s the boss).

I got a good look at her then she, my husband, and DK’s team were off to the CVICU. Kady’s oxygen kept dropping, and they couldn’t quite get her stable, so finally, the call was made to put her on ECMO. She was three hours old.

The next morning, she went in for her repair surgery, and they found she had 10% of her left lung and 15% of her diaphragm. Thankfully, the pressure of the spleen did not harm her right lung. Following her surgery, things quickly began to go well. She was taken off ECMO at 11 days old and moved to the NICU at 12 days. On day 18, she was extubated, and we heard the most beautiful and difficult cry. A day later, she was in our arms. By the time she was a month old, she was on wall oxygen and trying to eat. At six weeks old, and like many CDHers, she ended up with the Nissen/Fundoplication procedure. Two weeks later, on May 11, she was discharged.

We had our then three-year-old son with us during our time in Florida, who looked at this journey as an adventure. The amount of patience and support that little guy showed his sister eased a lot of worry for this mama’s heart. Thankfully, we only live five hours away, so we had visitors every weekend. He got to go home for weeks at a time and feel a sense of normalcy. But arriving home with our little girl was the most amazing feeling. We were finally home together and got to start our new lives with our warrior. We’ve had our struggles, but we have had way more good days than bad. She has met her milestones at her own pace and has come into her own (very large) personality. To see her and not know her story, you could never tell she’s endured all she has. Our kiddos have been a daily reminder that God answers prayers, and there is hope to found. What others may have doubted, she proved possible. With every beautiful breath she takes and every high-pitch squeal we hear, we are reminded of God’s grace and the amazing work He is doing through Dr. Kays and the JHACH team.