On April 4, 2016, we were overwhelmed with joy as we welcomed our beautiful daughter, Ella, into the world. She brought so much light into our lives during her first twelve months, teaching us the joys and challenges of being first-time parents. Watching her learn to crawl and hear her say her favorite words, “Dada” and “What’s that?” filled our hearts with happiness. Ella loved playing peekaboo, balancing on her daddy’s hand, and pretending to read, moments we will cherish forever.

However, our world took a heartbreaking turn in April 2017 when Ella began showing signs of illness. At first, it seemed like just a cold, but our worries grew when we noticed her wheezing. In a moment of panic, we rushed her to the hospital, unaware that her noisy breathing was a symptom of a much more serious condition. Shortly after Easter, we received devastating news: Ella was admitted to St. Louis Children’s Hospital for heart failure.

This news hit us like a thunderbolt, especially since there was no family history of heart disease on either side. The doctors proposed that a virus had triggered her condition. Following a tough week in the hospital, we dared to hope when she seemed to improve and was released home. While there were still challenges ahead, we felt relieved, believing we had overcome the worst.

As we continued with her weekly check-ups, Ella appeared to be progressing well. We woke up on May 15, Ella’s dad’s thirtieth birthday, blissfully unaware that this day would bring unimaginable sorrow. With a tropical vacation planned for the next day, we were busy finishing work tasks when we received the chilling call from daycare—Ella’s lips were turning blue. Our hearts sank as we rushed to the emergency room. It became a whirlwind of fear when we learned she needed to be transferred via helicopter to St. Louis Children’s Hospital. Since only one person could accompany her, we made the heart-wrenching decision for Kyle to drive, believing he would arrive around the same time as the helicopter. He kissed Ella goodbye, unaware those would be his last moments with her.

As Ella and I waited for the helicopter, I could see the fear in her eyes. I desperately tried to comfort her, promising her more of her beloved Tater Tots at the hospital. I told her how brave she was and how excited her friends at daycare would be to see her helicopter pictures. But then, the medics arrived, explaining they needed to adjust her breathing tube. They warned that it might be uncomfortable, and they needed to sedate her a little to keep her calm. Holding her hand, I watched as her eyes fluttered closed, but then the unthinkable happened—she flatlined. 

Chaos ensued as the medics fought to bring her back. At that moment, I called Kyle via video, wanting him to be there with us. Even amid the chaos, I held onto hope that they would save her. I passed my phone to a nurse, allowing Kyle to witness what was happening while I moved to sing her favorite song, “Que Sera Sera,” over her. I don’t remember when they stopped the compressions. It felt like time stood still until, at last, everyone stepped away from her bed, and I was left singing to a silence I could hardly comprehend.

My initial reaction was a desperate hope that this was all a nightmare—that if I could wake up, I would find Ella safe in her crib. But reality crashed down on me as I gazed at my husband’s anguished face on my phone. At that moment, the truth set in: she was gone.

Ella’s death shocked us and everyone around us, including the medical team. It wasn’t until six weeks later that the genetic test results revealed a rare heart mutation that led to dilated cardiomyopathy, indicating her heart had become too large to function properly.

In the aftermath of this unimaginable loss, finding a way forward felt daunting, but we resolved not to let this tragedy define us. In Ella’s honor, we founded a nonprofit called Ella’s Umbrella, driven by the desire to protect other families from experiencing the pain we endured. Our mission focuses on supporting pediatric heart research and advancing technology in this vital field. We also strive to create resources and support for those who are grieving, helping them channel their sorrow into meaningful actions that uplift and inspire change in the world.