COTA for Team Ethan

Our Story

Ethan’s heart journey began in utero. At 20 weeks, we went in for our big ultrasound to get everything checked out and maybe even find out if we were having a boy or girl. Jim wanted to know and I wanted it to be a surprise, so we compromised (haha) and were going to find out.

I got settled in for the ultrasound and Jim was in the room with me for all the “excitement”. Ethan being our first, we didn’t know what to expect from the ultrasound. The tech moved through her routine, making notes here and there and taking pics throughout the ultrasound. She was very quiet though, and I noticed she kept going back to the heart. I thought, yup, it’s an important organ so best to check it out! After about 20 minutes, she told us she was going to talk to the doctor but would leave me as-is because the doctor might want to take a look. We waited and waited, then the doctor came in- also fairly quiet and serious. She took another couple minutes to check again on the ultrasound and then the words came. She looked at us and said, “Your baby has a heart defect.” 

Beyond that, I don’t recall if she said more about the defect or not. The doctor’s words fell like concrete on my heart. What does that mean? Is our baby ok? What do we do? What will happen? Did I do something wrong? The questions swirled in my head. From there, we were set up with a pediatric cardiologist who I would see each week for the remainder of my pregnancy. Jim and I were stunned to say the least. We even forgot to ask or find out about whether we were having a boy or girl.

When we met with the pediatric cardiologist, we were given Ethan’s diagnosis: Double Outlet Right Ventricle (DORV), Ventricular Septal Defect (hole in the heart), and pulmonary stenosis. DORV is a congenital heart defect where both the aorta and pulmonary artery originate from the right ventricle, instead of the normal arrangement of the aorta arising from the left ventricle and the pulmonary artery from the right ventricle. This means oxygen-poor blood circulates throughout the body, leading to various symptoms and requiring surgical correction.

The diagnosis was known, and a plan was put in place for after he was born. Ethan was born on May 15^th, 2007. He was whisked away to the NICU after we were able to see him for about two minutes. Ethan had his first open heart surgery at 10 days old…the BT Shunt (Blalock-Taussig Shunt), which is a surgical procedure used to improve blood flow to the lungs in cases like Ethan’s. Handing one’s newborn over to a surgeon to perform open heart surgery is terrifying…talk about trusting! The procedure went very well, and we were able to bring Ethan home about two weeks later.

When Ethan was about 18 months old, he had his second open heart surgery, the bi-directional Glenn. This procedure is used to improve blood flow in patients with single ventricular heart conditions such as DORV. Again, the surgery went smoothly and we were able to bring him home about two weeks later.

At this point, we knew Ethan had to grow before the next procedure; so that the parts of his heart the surgeons replaced could be large enough to last Ethan for many years. He began preschool and was a happy camper. His sister, Grace, came along just before Ethan turned three and he was very excited to be a big brother.

By four and half years old, Ethan had grown enough. It was time for him to proceed with the next surgery, known as the Fontan procedure (non-fenestrated). The goal of Fontan surgery is to improve blood flow by redirecting deoxygenated blood directly to the lungs, bypassing the heart’s ventricles. This would allow Ethan’s heart to pump only oxygenated blood to the body, improving overall circulation and oxygen levels. Our family knew the Fontan procedure was all part of the plan, but we didn’t understand all the repercussions of this particular procedure. We were so used to bringing Ethan home two weeks after surgery, but Jim and I were told this time he could be in the hospital for months recovering!

This surgery was longer than the previous ones, and Ethan also came out of it with three excruciatingly painful chest tubes to drain fluid buildup. His chest tubes had to have minimal drainage before Ethan was allowed to be released. Unfortunately, some Fontan patients have extensive drainage, and the surgeons don’t know why. Ethan was one of those patients. He needed to get up and walk around to help move the healing process along. Watching as our little guy struggled in pain is by far the hardest situation we’ve had to deal with as parents. Thankfully, after many years, he has little recollection of that. We spent Halloween in the hospital, but after one month of hard work, Ethan was able to come home in time for Thanksgiving!!

Time passed and Ethan grew; although he was always a good deal smaller than others his age. He started school, made friends, played sports, and he LOVED climbing trees! He was always active, but took breaks as needed and was always good at monitoring himself. He saw his cardiologist regularly, and would have occasional procedures to check his heart and pressures.

Later in elementary school, Ethan started randomly throwing up. No one associated it with his heart. It took years, and a visit to the ER at age 16 with what we thought was something totally unrelated to his heart, to tie it to a new diagnosis of PLE (Protein Losing Enteropathy). PLE, a serious complication of the fontan procedure, is a condition where excessive amounts of protein, including albumin, leak from the bloodstream into the intestines. This can lead to various symptoms such as vomiting and fluid retention. During that trip to the hospital, Ethan wound up getting multiple infusions of albumin followed by Lasix, to help flush the excess fluid his body had built up. When he left the hospital several days later, he was about 30 pounds lighter of fluid and looked and felt like a new person! This was the start of the process that led to Ethan needing a heart transplant.

Discussions began and he went through the process of being evaluated and approved for a heart transplant. Thankfully, Ethan is very healthy for a heart kid. You’d never know just by looking at him! He’s physically active and loves playing D&D with buddies, good food, family, and sleeping…a typical teen!

In August of 2024, after much evaluation and testing, Ethan was placed on the pediatric heart transplant list. Ethan spent his senior year of high school managing his symptoms and waiting for a heart. On June 16, 2025, Ethan graduated high school!  His next step is to live in-patient full time at the hospital. This allows Ethan to be bumped up to the most critical need for transplant and hopefully get his heart transplant soon.

This is also hard because there is another side of heart transplants; one life must end so Ethan’s life can continue. Our family is so thankful for anyone who is a registered donor, and we pray for the family that will be losing a loved one so Ethan can gain a new heart.

Thank you for taking the time to read about Ethan’s story. We plan to use this website as both a means of fundraising in honor of COTA for Team Ethan, but also to keep our friends and family updated on Ethan’s heart transplant journey (subscribe to updates on our homepage). I hope we have inspired you to do a few things-

• Become a registered donor.
• Support Ethan’s local children’s hospitals (Seattle Children’s Hospital and Mary Bridge Children’s Hospital), or your own local children’s hospital.
• Donate to COTA for Team Ethan

Love,

Elaine