Ethan was born on November 17, 2010, in Milwaukee, Wisconsin, with hypoplastic left heart syndrome. We learned about his condition during my 19-week anatomy scan and were told his chances of surviving his first open-heart surgery were very small. To give him the best chance at life, our doctor decided it would be safest for me to deliver him by C-section.

At just one day old, Ethan underwent the Norwood procedure. The surgery went well, but complications quickly followed. He was heavily sedated and placed on ECMO to support his tiny body. I wasn’t able to hold him until he was six weeks old. Seeing him with so many tubes and wires was terrifying, but I knew he needed to feel my touch. Feeding was difficult, so Ethan received a feeding tube, and after a long and stressful recovery, he was finally discharged at three months old.

He was home for only a week before we had to return to the hospital because he struggled again with feeding. After several weeks and more evaluation, the care team decided it was time for his second open-heart surgery. This time, Ethan began to thrive. His feeds improved, his energy returned, and he became the happy baby boy we had been waiting to see.

Soon after his recovery, our family moved to Jacksonville, Florida, due to my husband’s military service. Ethan continued to grow and do well, though he needed oxygen support around the clock and relied entirely on his feeding tube for the first year of his life. With physical, occupational, and speech therapy, he continued to make steady progress. We were so grateful that, despite his heart condition, he was able to explore the world, dance, sing, and just be a toddler.

At three years old, Ethan had his third and final scheduled open-heart surgery at the Children’s Hospital of Wisconsin. This recovery was smoother than the others, and he was finally eating and drinking by mouth, allowing us to remove his feeding tube. From that point forward, Ethan was seen by cardiology every 6 months to 1 year and underwent a few catheterization procedures along the way, but overall, he continued to do well.

Everything changed when Ethan turned 14. In November 2024, he was hospitalized with walking pneumonia and other viruses. He recovered, but something never felt quite right. He was easily fatigued and short of breath, especially with exercise. When we returned for his regular cardiology visit on February 5, 2025, he was unable to complete his stress test. A chest X-ray showed fluid around his lungs, and he was admitted for diuretics. Things seemed to improve  until February 10, when Ethan suffered a stroke while still in the hospital. Thanks to the medical team’s quick action, he made a full recovery.

Two days later, during a procedure to check his lungs, Ethan coded as he was being extubated. Although he was resuscitated quickly, his heart function declined even more. On February 21, Ethan was officially listed for a heart transplant. Just five days later, we got the call  a donor heart had been found for our boy.

Ethan went into the operating room on February 28, 2025, for his heart transplant. The surgery lasted 15 hours. We barely had time to process what was happening, and Ethan didn’t either those three weeks in the hospital were a whirlwind.

Recovery was slow but steady until he contracted Legionella from contaminated hospital water. This led to a tough period of delirium that lasted nearly six weeks. Watching him go through that was one of the hardest experiences of my life. With the support, expertise, and compassion of so many doctors, nurses, and therapists, Ethan slowly began to return to himself.

On April 8, 2025, Ethan was finally discharged truly on the other side of a battle none of us were prepared for. We are beyond grateful to have him home and healing. This journey has been long and incredibly hard on our entire family, but Ethan has shown us what strength, resilience, and hope look like.

Our Heart Warrior continues to amaze us every day.