Tuesday, February 10, 2015

CHD Awareness Day #4, Realization

It took me a long time to realize that C4 was never going to be cured.  No matter how skilled the surgeon, there was never going to be a point wher ethe doctor would say "Ok, your heart is good now, you no longer need a cardiologist".  C4's heart will always be broken.  With skilled repairs and careful manipulation of what the surgeon had to work with, we've achieved "good enough for now".

When you tell people you're going to have a baby with a congenital heart defect, almost universally, they tell a story about their friend who had a heart baby who had open heart surgery as an infant and "they are totally fine now".  For some defects, that may be true, but regardless, that heart now has scar tissue and modifications that will forever change how it operates.  That heart can never be normal, it must be managed.

People think that congenital heart disease is something that can be fixed and then you move on, but it isn't.  It is a life long affliction with lasting conseuences.

Some days, I barely think about Charlie's heart.  Some days, I don't imagine when the next surgery will come.  Most nights, I check on him, to make sure he's still breathing.  Most nights, I realize, this is a journey that will never end.


  1. You know I didn't even notice the faint glimmer of his scar the first time I saw this pic... now after reading the other awareness posts and seeing little baby c4 with his fresh scar did I notice it!

  2. I hate the "perfectly fine now!" responses from people about my daughter--their assumption is always that she's fixed and no more need to worry. The reason I hate it is because there is this thought that once you have a surgery or two, you're fine, so why do we need to spend money on research? We already have a cure!! My daughter has a very good chance of never needing another surgery, of never having any significant problems later on. But that's just a chance, not a certainty. Just the act of having surgery puts her at risk later of serious and significant problems so she will always see a cardiologist, she will always be on the lookout for symptoms that may indicate developing problems, she will always have to consider the possibility of complications when she wants to do something. I don't go into detail when people declare "she's perfectly fine now!" (unless they ask) but I do give a gentle "surgery is not a cure and she will see a cardiologist for the rest of her life to watch for complications in the future" for the plain and simple fact that I want to raise that awareness, even if in only one person, in the hopes that we can change the mindset and get more funding for research :p

    (sorry for the small novel lol)