CHD Awareness: The Scary Truth

Again, facts (in italics) are from the Children's Heart Foundation:

CHDs are the #1 cause of birth defect related deaths.  Each year, over 1,000,000 babies are born with CHDs worldwide.  100,000 of them will not live to see their first birthday - and many more die before adulthood.

I'm skipping some information between the number of diagnoses and deaths that I'll come back to later in the week (detection, treatment, the amazing improvements in life expectancy of these babies, etc).  But, you see, this week is about awareness - do I have your attention now? 

Can you believe that 10% of babies born with CHD's (worldwide) don't even see their first birthday?  I know from my experience with Brooke that that day is kind of bittersweet - you miss the days of your "little baby" but are so excited for that special milestone.  I can't even imagine how that day would feel if you were remembering the birth of the baby you lost - how much more intense those bittersweet feelings must be.  My heart aches for all of those mothers just thinking about it.

91,000 lives a year are lost to CHDs in the US.

Now, we're not just talking about the kids.  There are adults, too - some that aren't diagnosed until adulthood, some that are survivors of CHDs diagnosed in adulthood.  This means that yes, improvements have been made in the treatment of CHDs - but there is so much further to go.

In the US, twice as many kids die from CHDs than all forms of pediatric cancer combined.

We've all seen the ads on TV - the kids suffering from leukemia or other cancers.  Yes, that's devestating - and I am in no way advocating that attention (or funding, which will be another day) should be taken away from pediatric cancers - I simply believe more people should see CHDs as well.  More should be known about CHDs - because there is no prevention or cure for any CHD.  Parents, grandparents, aunts, uncles - all should know the truth that CHDs kill more than childhood cancers.  Period.

The link to today's heart mommy is a sad story - and, unfortunately, I've read quite a few - in fact, it was hard to choose which to include here.  Ultimately, I chose three - and this is narrowed down from all the stories I've read. 

First, the story of Jill, who lost her approximately 7 week old son to HLHS several months ago.  I have blogged about baby Joshua before, and the backlash that came after his death (circumcision controversy), but, to me, that backlash only shows how little people understand about CHDs.

Second, the story of Kristin, who I believe I've also blogged about.  She is the mother to Luke, who also lost his battle to HLHS - at 12 days old.  She and her husband are now expecting their second child.

Finally, the story of Megan, who lost her baby Cohen to HLHS at 11 days old.  I am amazed at her strength that flows through her writing when she writes about Cohen.

*For the record, I don't really mean to scare you - OK, maybe just a little - sometimes fear is the best motivator of change.