My son is like any normal almost two-year-old boy. He’s rowdy and loud and active. He loves trains and anything with wheels. He’s good at throwing a ball and he’s a quick runner.
What our pediatrician first thought was “not good, but not bad” turned out to be more serious than we imagined.
We took our little guy to the pediatric cardiologist about 90 minutes away. The same cardiologist who had read the echocardiograms performed in our home town previously. One quick listen and he said he heard stenosis. He told us that he was going to have his staff perform another echocardiogram because they knew exactly what to get images of and what to measure.
Stenosis was not a word we wanted to hear. When our doctor originally called me on the phone and said that the bad news was that our son had a bicuspid aortic valve, she said the good news was that there was no evidence of stenosis or regurgitation. People can live a very normal, healthy life with a bicuspid aortic valve when there is no stenosis, maybe never having a single problem.
The cardiologist wanted to measure the degree of narrowing. If it was minor, then there would be no problems.
My heart sank when he told us less than an hour later that there was moderate stenosis. And there was no way to tell at that time if it was worsening or if it had always been at this level. We would have to return every six months for another echocardiogram until he is grown.
The doctor started explaining stenosis and what happens if it becomes severe. They can go in with a balloon catheter and enlarge it. But this might cause leakage. And if there is leakage, then his valve may need to be replaced.
A valve replacement? Open-heart surgery? On my healthy little boy?
We were told there is nothing to worry about now. Don’t even think about it. Do not treat him any different. Don’t restrict his activities. Nothing has changed. We’ll monitor him and deal with problems if or when they arise.
So after that day, I did just that. I put it out of my mind.
I have enough to think about with the daily care of my daughter. Care that is literally life or death for her.
There are long stretches where I have completely forgotten about this congenital heart defect.
He is healthy. He is active. He is all boy.
And then I am reminded and my heart sinks. It’s more than a parent can take. To have two children, both children, with potentially devastating health conditions.
In my heart of hearts, he will have a normal life. He’ll be a tornado on the playground. He’ll overtake his sister in height. He’ll play football. He’ll wait for his beautiful bride at the alter. He’ll have children of his own.
And then I am snapped suddenly back to reality, just reading the day’s news.
And I am reminded.
And my heart is heavy.