Our Sam was a very special little boy. He endured more than any little one ever should have had to.
He had Tetralogy of Fallot, a condition caused by 4 defects: VSD (a hole between the ventricles), overriding aorta (aorta is not correctly placed), pulmonary stenosis (narrowing of the pulmonary valve, but in Sam’s case he had pulmonary atresia, or lack of a pulmonary valve which allows blood to flow from the heart to the lungs to pick up oxygen), and right ventricular hypertrophy (thickening of the muscle walls).
He also had complete atrioventricular (AV) canal defect. The way it was initially explained to us is that the middle of his heart didn’t form. He had one central valve instead of the normal mitral and tricuspid valves. This results in blood not being routed correctly through the heart and mixing of deoxygenated and oxygenated blood.
He also had a condition known as heterotaxy. This can cause multiple organs in the body to form incorrectly, in the wrong place (or not at all), and can cause function issues. Sam had left sided isomerism of the heart meaning both sides of his heart looked like the left. One common part of heterotaxy can affect the spleen (asplenia or no spleen present, ploysplenia or lots of mini spleens that don’t function or a non-functioning spleen). There wasn’t any real test that could be done, but based on some other factors, we operated under the assumption that Sam’s spleen was not functioning therefore he was on a regimen of daily antibiotics. Did you know that your spleen contains white blood cells that can help fight infections in your body, it controls the level of blood cells in your body, and it also filters and removes old or damaged red blood cells? I had no idea how important the spleen was before this.
He was born 9/14/23 and his team immediately sprang into action to help him. He spent nearly his first month of life in the hospital, but were were blessed to bring him home for a few months. We got Halloween, Thanksgiving, Christmas and New Year’s with him. We went to the beach, we watched football, we spent a lot of time with family. He went I to the hospital 1/4/24 to have his full repair, but things were much worse than anticipated. Multiple heart surgeries (including a procedure that he was only like the 70th infant to have this done), multiple caths and scans, a couple journeys on ECMO, a tracheostomy… we hoped we could buy him time, but his body grew tired and we said goodbye on 4/21/24 after taking our Sam into the sunshine one last time and giving him his first and last taste of food: chocolate ice cream. He was surrounded by family and cradled in his mommy and daddy’s arms when he took his last breath.
Despite the battles and challenges Sam faced, he was a happy boy. His smile could light up the whole world. His looks made you feel like the most special person in the room. His little sounds were everything to us, especially is little howl. Our Little Wolf. Our Sammy Sunshine.
So we walk for him because he can’t. We walk to raise awareness for CHD. We walk for the other angels and warriors and their families. But mostly… we walk for Our Sam.
