“My two-year-old James is stronger than I will ever be.
Two days after he was born, the doctors detected a heart murmur in our little guy. After some tests and imaging, it was determined that James had a ventricular septal defect (VSD), a common type of congenital heart defect.
However, James’s defect was rare. It was right next to his pulmonary artery and aortic valves which made it very unlikely for it to close on its own like so many do. We were also told that he probably will not grow, will have trouble eating, will most likely have a NG tube, and will need open heart surgery before he was four months old to save his life.
Mom and I were devastated. As brand new parents, we had just been told our perfect newborn wasn’t perfect; that’s how we felt, at least.
We felt the need to explain it to everyone he met, and felt ashamed of ourselves if we didn’t. We went to therapy, my wife and I sobbed for weeks. We lived in fear, wondering, ‘when will the symptoms start to show up?’
We absolutely dreaded the thought of open heart surgery.
As time went on, we never saw any signs or symptoms. James grew, ate, hit milestone after milestone. Tests started to come back more and more promising. We were told he may actually avoid surgery. We were ecstatic. Until his latest appointment with his cardiologist.
They found that his heart had enlarged past safe ranges and the pressure in his lungs was growing and could cause permanent damage if left untreated. All of a sudden, open heart surgery was a sure thing. Something that we had dreaded for two years was going to happen.
We got referred to University of Michigan’s children’s hospital and within a month we were there, preparing to send James into surgery. The hardest moment of my entire life was the moment when the nurses wheeled my son’s hospital bed away from me and told me I couldn’t go with him any further. I broke down, right there, in the middle of the pre-op lobby.
After about 4 hours, the surgeon came into the waiting lounge and delivered to us the best news we had ever gotten. James did amazing. His defect is repaired, there were zero complications, he is breathing, and his heart is beating on its own.
Our baby boy was perfect again.
It’s been one week since James’ surgery; he is recovering ahead of schedule and doing great.
I will never take being a dad for granted. James is the best teacher I’ve ever had, and he’s stronger than I’ll ever be.
It’s hard being a dad, especially when your two-year-old has a really big ouchie on his chest and doesn’t understand why. I figure, maybe if Dada has an ouchie too it won’t matter anymore. Dada’s ouchie is sound-waves of us singing ‘Twinkle Twinkle Little Star’ together like we do every night before bed.
I will always have your back, James.”
– Brenden Schlott
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