A Little Life, A Lasting Legacy

Owen Frederick Davis

08/18/2020 – 05/24/2022

Written by Kelly

Owen was born on 08/18/2020 and lived his entire life at Children’s Nebraska Hospital. Even though he never left the hospital, his ability to touch the lives of others reached far beyond its walls. He was born with complications from heterotaxy syndrome that made his anatomy very complex, and he was unable to receive the traditional “single ventricle” care or surgeries.

Although we knew our time with him would be limited, we made the very best of it.

He was a very happy boy who smiled at everyone who walked by his room. He quickly became a celebrity at the hospital, especially known for his blond curly hair. He was often called the “Ed Sheeran” of the hospital. Most of the staff knew him by name, and he had many, many friends. Owen’s light and determination to fight inspired everyone around him. He changed our family’s lives forever, making us stronger, deepening our faith, and giving us greater empathy for others. I remember one doctor telling us near the end, “I have never met another kid who crawled through broken glass so many times, just to make it out on the other side smiling.” He was a huge fan of Paw Patrol and spent every afternoon sitting in his wagon pulled up to the TV. Owen and Mom would sit together, watch cartoons, and play with blocks, and then we would always take a nap in the recliner after lunch.

Owen left a legacy at the hospital. When he was an infant, we raised money to purchase sets of swaddles and bed sheets for new families in the cardiac ICU. After he was born, so much felt out of our control, and not being able to bring your baby home is incredibly hard. Most days, the only thing I could do for him was make his bed and bring a small touch of home into the scary hospital room. We wanted other families to feel that same sense of “home” away from home, because it brought us a little peace during such a frightening time. Owen also loved The Very Hungry Caterpillar, so each year on his birthday we donate a copy of the book, along with a plush caterpillar, to patients in the cardiac ICU as a “birthday gift.”

Unfortunately, we do not have any photos of Owen wearing his cape. Because of his medical complications, he often could not wear clothing, so we never put the cape on him; instead, it hung on his bed most of the time. Still, being part of the Heart Heroes family was a lifeline for us then, and it remains one today. Spending 21 months in the hospital was incredibly isolating, especially because Owen lived during the height of the COVID pandemic, from 2020 to 2022. His only visitors were his mom, dad, and older sister, which meant very few people were able to meet him or help carry the pain of being there every day. The unexpected balloons, scooter gift cards, and Chick-fil-A dinners meant so much to us. They reminded us that, although COVID precautions kept us physically apart from others, we were not truly alone. Since Owen’s passing, returning to “normal” life has been difficult.

We are deeply grateful for Heart Heroes and the Angel Remembrance Program because it allows us to remain part of the CHD family and continue connecting with other families, even though our child is no longer physically here. Losing Owen was incredibly painful, but not losing our CHD family helped ease that pain in a small way. We will always be grateful for Heart Heroes, for everything they have done for us, and we will be part of this organization for life.