COTA for Ethan's Journey

Our Story

Ethan was diagnosed with hypoplastic left heart syndrome at 7 months gestation. We had already picked his name at this point. Ethan, in Hebrew, means “firm, enduring, strong and long-lived”. We knew from early on that he would be a strong individual and that God had big plans for him. We just did not know what that would look like.

After several trips to see some amazing doctors in Dallas, we discovered that he had this condition and that it would require multiple open-heart surgeries to “correct” his anatomy in order to allow him to live. There was a possibility that his first surgery would be at around one month, the second would be around 5 months and the third would be at around 2 years. However, after he was born, they performed an echo of his heart and discovered that his aorta was too narrow and that would need correction immediately. This moved his first surgery to the first week of life. We prayed and asked God to protect him and to keep him strong. God is faithful and Ethan pulled through like a champ. He learned to eat rather quickly, and we were able to bring him home after only 3 weeks.

He met all of his timelines physically and was growing well. Then the time came for surgery number 2. This one presented challenges, but again he recovered very well and we adjusted, and he continued to grow and thrive. He was learning to crawl and roll over and all of those things a parent expects their tiny bundle of joy to accomplish in these early months. He was our joy.

At 22 months, we were told it was time for surgery number 3. We were prepared and thought all would go as well as the first 2. We had no reason to believe otherwise. He had lived up to his name every day. We saw God work in him and he was strong and had a great little personality. At this age he was able to throw a golf ball into a coffee can from 10 feet away. WOW! He amazed us every day.

Surgery number 3 was certainly a harder one. It took longer than expected and he did not pull through as well. As a matter of fact, he seemed to decline. After one month in the hospital, the doctor sent us home on oxygen and we hoped that being home would help him recover and help us recover from the stress and that would solve the problems. We were wrong. He lost access to his left lung and his, then undiagnosed, asthma was impeding his ability to breath. After the asthma diagnosis, we were life-flighted back to Dallas for further evaluation and intervention. Many breathing treatments and an attempt to regain access to the left lung proved only to be partially successful. The left pulmonary artery was completely blocked. From this point forward, he would only have one functioning lung.

But, God is good, all the time, and all the time, God is good. This is the theme of Ethan’s Journey. Ethan recovered and now we knew that we would not only be treating his heart, but also his lungs. We would be working to maintain his heart health and his lung health from that point on. There were no other major surgical interventions to be done. Now, we maintain.

He was growing and thriving. This was a blessing. As he grew his personality began to take shape. He loved Legos, sports and all things outdoors. He would live off the land at age 4 if we let him. Outside was his happy place. It still is. He loves to fish, hunt, bike, and explore the great outdoors. God has continued to bless him and to use him to bless others. The miracle he is has touched so many lives and we believe he will continue to do so for many years to come.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.