I've spent a fair amount of time over the last few days, while Oli and Athan have been napping or in the middle of the night when I can't sleep, pouring over the internet trying to find anything and everything I can about Hypoplastic Left Heart Syndrome. My hope is that if we can at least understand what IT is, then maybe we can deal with all of this a little better.
I think we're in a position in which we'd easily like to ask, "Why?" Why, does our little girl have to have this defect, when it only occurs in roughly 9 out of every 10,000 live births? Why our family? Why wasn't one "heart child" enough? The simplest answer, of course, is genetics. Something in our genes, either JR's or mine, that caused something in Athan and Jillian's hearts to "zig instead of zag" as JR likes to say.
But, the fact remains, that no matter how many times we ask "why?" we will never get an answer. Not one that really makes sense. I've heard that some questions are better left unanswered, but this just proves that some questions just don't have answers.
In my search for all things HLHS, I found some pretty helpful websites. One is littlehearts.org and has stories of all kinds of "heart kids". There's stories of kids who have survived and thrived with HLHS-some of them even 20 or more years old (sad thought, I know, that 20 or 30 years old is a "long life span" for these kids, but at least they have been given a chance). There's stories of kids who did well at first, then died later. And there's stories of kids who never really had a chance. There's even stories of kids with Athan's condition (Coarctation of the Aorta- COA).
I've looked at the American Heart Association website. The Mayo Clinic website and just about every other one I can find. I've read up on all three of the surgeries, and have seen pictures of actual, teeny, tiny hearts comparing a healthy one to a HLHS one. I've seen countless pictures of little ones with noticeable scars running down their chests. It sucks to think that Jillian will be one of these kids, but I'd rather her have a scar than not give her a chance at all. After all, just over 2 years later, we rarely even notice Athan's scar anymore.
I guess my hope is that by learning as much as possible, we can prepare ourselves, if only a little.