Ms. Badly Hadley's Fight

Congenital Diaphragmatic Hernia, CDH, ECMO, CDH Support, Charity Golf
Congenital Diaphragmatic Hernia, CDH, ECMO, CDH Support, Charity Golf
Congenital Diaphragmatic Hernia, CDH, ECMO, CDH Support, Charity Golf

The morning of Friday June 12th was supposed to be like any other we’d experienced to this point in our pregnancy – Katie’s 20-week ultrasound - a couple “she still looks great”, “keep up the good work”, handshakes all around, and we’ll see you again in another four weeks. Then it wasn’t. The sweet face of our ultrasound tech scrunched, squinted, and contorted before finally having to ask us to sit tight while she went to get our doctor. Seven hours and several additional viewpoints later, we were crushed by three simple letters previously completely innocuous, CDH – short for Congenital Diaphragmatic Hernia (What is CDH?).

Over the next several weeks the initial sting began to fade a bit, and optimism began to replace despair as we realized that we each took our own path to get here and this was just hers. By then we had also received positive news that not all CDH cases were created equal, and Hadley’s had several contributing factors that made it likely after an initial surgery to repair her diaphragm she would go on to live a happy, relatively normal life. Hope filled our hearts and we knew that our little fighter baby would overcome.

Unfortunately Hadley had other plans, and at 24 weeks decided it was time to see what all the fuss was about, and against the efforts of several highly trained doctors she wouldn’t be deterred and made her grand entrance at 10:03 AM on July 20th, 2015. She was truly the most beautiful thing we had ever seen – all Mom from the nose down, and all Dad from the eyes up. Independent of each other CDH and a 15-week premature birth are both extremely dangerous, but combined the prognosis was as grim as could be. It was recommended we consider comfort care, essentially not attempting intubation and having her given right back to us to pass peacefully with us within minutes of birth. But knowing our fighter we chose to give her a chance to respond to initial intervention procedures, which to the surprise of many she took to and ran with immediately.

For six days we watched in amazement as Hadley hung on with 34% of the normal lung volume for her gestational age and even began showing positive responses to the seemingly endless flow of pricks, tubes, and medications needed to keep her alive. Unfortunately for all that loved her, early the morning of Sunday, July 26th, Hadley’s fight came to an end due to multiple complications arising from her conditions. Being aware of her declining condition, we were there with her in the NICU for the last several hours of her life, and she was actually in our arms as she took her last breath. There was no pain, no suffering, no fear, and she looked as peaceful as one could possibly imagine as she moved onto her calling for bigger and better things. It’s our opinion that her beautiful mind and sweet soul were simply too strong with too grand of plans for the body she was given.

With her spirit in our hearts the fight most certainly goes on, and looking for a cure to this disease as well as supporting future families dealing with this condition is the reason we’re asking you to tee ‘em high and let ‘em fly with us!


Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.