Sunday, February 10, 2013

Congenital Heart Defect Awareness Week 2013

It's Congenital Heart Defect (CHD) Awareness Week (Feb. 7-14) what?  Anyone on any form of social media knows that it's always some sort of "awareness week."  This constant barrage of "awareness" seems to bring more apathy than anything else.  Too often what I see being posted on Facebook to bring awareness to any sort of cause gives very little information about the cause (thus not doing a very good job of raising any real awareness), and is generally passed over as spam.  And yet, here I am, writing about CHD Awareness, and sharing it on Facebook. 

As most people reading this already know, my daughter, Lynnea, was born with a congenital heart defect and passed away 20 months later.  This is why I feel obligated to write about heart defects during this week, but I hope that I can say something that is truly valuable rather than just adding to the awareness spam.  The problem is that, unless your baby (or a baby that you are close to) is born with a heart defect, most of what I have to say isn't going to mean much.  It doesn't really matter to most people that 1 in 100 babies is born with a CHD, or that about 10% of those born with a CHD won't live to see their first birthday.  Honestly, until I had a baby with a heart defect, facts and figures like that didn't really matter -- it's the kind of thing I would have read and thought "wow, that's kind of sad" and then moved on with my day without giving it another thought.  That type of "awareness" isn't really useful. 

So, as I was thinking about what to write to raise awareness for this particular cause, I thought about whether or not there was anything anyone could have told me before Lynnea was born that I might have cared about, or that would have mattered in the long run.  Yes, I really wish someone had told me about pulse oximetry.  Pulse oximetry is a way of detecting how much oxygen is in your blood; this sounds like some technical medical thing that is probably really complicated, but it's not -- many people have seen it on TV or experienced it in the hospital themselves -- it's that little clothespin-like thing with the red light that is stuck on the end of the finger of adults.  It doesn't hurt, it's non-invasive, and like I said, it's actually a really common thing used in adult patients.  Pulse oximetry for babies doesn't use the clothespin-like thing, instead, it is a bandaid-like thing because the clothespin thing is too big to put on a baby's finger or toe, but it works the same, and it's still painless and non-invasive (and, in case anyone is wondering, very inexpensive).  Anyway, I really, really wish that someone had told me that pulse oximetry can (and should) be used on babies in the hospital shortly after birth.  If I had known this, I could have asked for it when Lynnea looked a little blue and her breathing didn't seem quite right before we were discharged from the hospital after she was born.  I didn't know anything about pulse oximetry, so when I brought up my concerns to the nurses about her color and about her breathing, I accepted it when they said she was probably fine and that I was just worrying too much.  A simple pulse ox test would have made me feel better (or, in Lynnea's case, would have shown that something was indeed very wrong with her and she would have gotten the medical attention she needed much, much sooner).  That's the kind of awareness that would have been helpful.  There are over 40 different types of congenital heart defects, and the ones that require immediate attention after birth can nearly always be detected with pulse oximetry; not all hospitals use this basic screening on all newborns, but anyone can ask to have it done, even if it is not standard. 

While there is very little known about the causes of most CHDs, it is generally agreed upon in the medical community that early diagnosis (like with many conditions and illnesses) makes a big difference in the outcomes.