We found at our 20 week ultrasound while pregnant with our little boy that his heart had not developed correctly. He would be born with several critical heart defects- Single Ventricle, Double Outlet Right Ventricle, Mitral Atresia, Coarctation of the Aorta. We decided we wanted to give him every chance we could and so he went to the Children’s hospital here in Utah as soon as he was born, and underwent his first open heart surgery, the Norwood BT Shunt procedure, at 6 days old.
Our plan consisted of 3 stages of reconstruction- the Norwood surgery, the Glenn surgery, and the Fontan surgery. His first surgery was a success, but we had a very rocky road afterwards. Complications arrived one after the other, it’s true when they say, “one step forward.. two steps back.” When Joey was 3 months old we were able to take him home, only to have to return 3 days later due to a virus and an Atrial flutter arrhythmia. The doctors decided that we most likely wouldn’t go home again until he was ready for his Glenn Surgery. So, that was our goal- our light at the end of the tunnel.
So many families that we had connected with that had undergone the same surgeries and had similar heart defects had told us that life becomes much more stable and easier after the Glenn, so it’s what we were hoping and eagerly waiting for– hoping that it would help our little boy to come home. At 4 months old, Joey went into his ‘Pre-Glenn’ heart catheter procedure, but we didn’t receive the news we were hoping for- Joey was not a good candidate for the surgery. It ended up being that his pulmonary pressures were fat too high to move forward. We felt absolutely crushed.
The following day our surgeon presented us with the idea of transplant, and connected us with the Heart Transplant Team. The second we met with the team, we knew that transplant would be the path Joey would take. Joey was placed on the UNOs transplant list and the beginning of August 2019. He was only on the list for 3 weeks by the time an organ became available. Joey received his new heart on September 6, 2019. It was the most bittersweet blessing we could have ever received! We’ve never been more grateful and loved a stranger so much as we did in that moment and every day since. Joey was able to come home the day he turned 6 months old. We’ve had a few ups and downs since transplant, but overall Joey is thriving and living a normal 2 year old life! He is mischievous, smart, playful, silly, and so so loving! We are now 1 1/2 years post transplant, Joey will be turning 2 years old in a few days, and we couldn’t be more grateful for the journey that led us here.. all because of a donor.