I have to admit: I tend not to be a very cause-oriented person. Right or wrong, I think it's at least in part a reaction against being the type of person who once felt like I had to care about every single cause that was put in front of my face, and the truth is, it's just not possible to care about everything. You have to choose.
You and I both know at least one thing I care about now (and if you're here, I'm assuming you do, too): Congenital Heart Defects (CHDs). In fact, I've got quite the bee in my bonnet about it.
Anyone who knows James and I knows that we are educated people. We had done a lot of reading and research. We had all the books, and we were aware of a litany of things that could go wrong with a pregnancy. And yet, CHDs never came up. Not once.
Prior to learning about Ewan's heart, I had never heard anything about congenital heart defects. I had heard of spina bifida, Down's syndrome, club foot, cleft palate, and a host of other abnormalities that may present themselves in an ultrasound. There was an awareness that just about anything could go wrong in a developing baby, including the heart, but in a very back-of-the-mind, I-don't-need-to-worry-about-it kind of way. I had never known anyone or heard of anyone who had experienced this, so in my mind, it couldn't be all that common or worth worrying about.
This couldn't be further from the truth. As birth defects go, CHDs are very common. In fact, they are the most common birth defect, occurring in 1 out of every 100 births. CHDs claim the lives of twice as many children as all types of childhood cancer combined. And yet -- in spite of how common they are -- pregnant women are not routinely screened. So many of the families we've met didn't know anything was wrong until after their children were born -- and in some of these cases, it was just too late.
But enough from me. I've barely started out on this road, and I'd like you to hear from someone who has more experience. Stefenie is another wonderful and encouraging Heart Mom I've met through blogging. In a recent post, she put some good words to that vague, niggling feeling I've had about the lack of general awareness that exists about CHDs. Please read on.