Heart Hero of the Month May 2023
Story by, ❤️Mom & Dad
Our Heart Warrior, Ezra, was born on October 25th, 2015. A healthy, happy baby boy. Two months later, at his well-child check-up, his doctor heard a heart murmur that she hadn’t previously heard. We were referred for Ezra to have an echocardiogram done. At the age of 4 months, Ezra was diagnosed with Subaortic Stenosis. It was noted that his Aortic Valve was normal-sized, he just had a small membrane growing underneath it. We left our first appointment at Children’s Hospital completely overwhelmed, but knowing Ezra’s case was mild. With a plan to follow up around his first birthday, we were very hopeful he might never need open heart surgery.
Unfortunately, at Ezra’s next appointment, his echo showed more membrane growth and some leakage with his Aortic Valve. This continued to get worse at each 3–6 month check-up.
In February 2018, at the age of 2, Ezra had his first open-heart surgery. They removed the membrane growing under his Aortic Valve. The surgery went great. Ezra breezed through recovery. He was discharged only 5 days after having open heart surgery! Looking back now the whole experience was a blur, but we were so thankful everything went well! We were told with Ezra being as young as he was, there was a chance of the membrane growing back over time, if that happened, it probably wouldn’t be for years.
Much to the surprise of Ezra’s cardiology team, at his 3 months post-op check-up, his echo showed that the membrane had already started growing back. It continued to grow so aggressively that he had a diagnostic Heart Catheterization Procedure in October 2018. In December 2018, at the age of 3, Ezra had his second open heart surgery to remove the membrane again. We went from thinking our child might never need surgery, to him needing two surgeries in the same year! Ezra’s heart had gotten so thick from working so hard, just like any muscle does, that the surgeon was not able to remove all the membrane this time. The surgeon also added a graft from a cadaver to his Aorta, hoping to help open it as much as possible. We went home after that surgery knowing Ezra would be back for another surgery. We hoped that he would make it at least two years before that time came.
Thankfully Ezra did. After another diagnostic Heart Cath in March 2021, at the age of 5, Ezra had his third open heart surgery in June 2021. He was born with a normal-sized Aortic Valve, but it never grew past that. Ezra was a 5-year-old with an Aortic Valve the size of a newborn baby. Because of this, his diagnosis has been changed to Aortic Stenosis with a subaortic ridge. It was also discovered that Ezra has a hole in his heart and Mitral Valve regurgitation. Three heart defects in total.
Ezra’s third surgery was called the Ross Konno. His surgeon replaced Ezra’s Aortic Valve with his Pulmonary Valve and put a cadaver valve in place of his Pulmonary Valve. The surgery itself went great but, during closing, Ezra’s heart rate skyrocketed. They put him back on bypass and found his right coronary artery had collapsed. It wasn’t getting any blood flow through it. Once that was fixed, Ezra’s heart was too unstable. He was on ECMO for two days and intubated for an entire week. Ezra battled many challenges while he was inpatient; high fevers, liver issues, feeding tube issues, needing respiratory therapy every few hours, difficulties keeping food down, vomiting with his meds, and he had to go back into surgery after two weeks to have a permanent pacemaker placed.
We can’t even begin to describe how unimaginably hard it is being in the hospital watching your child in so much pain, fighting to survive. Fighting to thrive. It feels completely isolating knowing the rest of the world is going about their normal lives right outside the door when your world is at a standstill inside that tiny room.
We were so thankful when we finally got to bring Ezra home in July 2021, after coming so close to losing him.
It took some time for all of us to get used to Ezra’s new normal; having less energy, taking more medications than ever before, and having restrictions because of his pacemaker. We continued with check-ups at Children’s Hospital every 3-6 months. In December 2022, Ezra had his third diagnostic Heart Cath to check on his right coronary artery. Unfortunately, they found that it had collapsed again at some point and wasn’t getting any blood flow through it. For an adult, they could do a bypass surgery to fix an artery issue like this, but as a 7-year-old, Ezra’s heart isn’t big enough for bypass surgery to be successful. With no other surgery options, Ezra will more than likely need a heart transplant. When that will be, will depend on Ezra and his heart. Hopefully not for a long, long time.
Ezra will never be a “normal” 7-year-old, but he doesn’t let his CHD define him either! He loves being outside, especially riding a dirt bike & four-wheeler, or playing with his older brothers. Living in Alexandria, Minnesota, we have a lot of beautiful lakes and parks to enjoy! Although school comes with some anxiety and exhaustion, he loves Physical Ed & Math. Ezra’s absolute favorite thing though, is making people laugh! He has the kindest heart and a smile that can light up a whole room. We are so appreciative to Heart Heroes for all that they do in helping so many Heart Warriors feel like the superheroes they are! We are so proud of our heart warrior, and how bravely he’s handled everything that he’s had to overcome.
