Day 7: In Search of Happy, Healthy Hearts

Did you know...

Heart defects occur in 40-60% of children with Down syndrome?

Sounds pretty crazy, doesn't it? 

• 60% of those defects are a Complete AV Canal Defect - AV canal is the tissue that forms the walls between the heart's atria (top chambers) and ventricles (bottom chambers).  When this development is incomplete, the blood leaks backwards through the valves, and heart surgery is required relatively quickly, at 3-4 months in many cases, or earlier if the baby is in active heart failure.  Usually it is preferred that the child reaches a certain weight first, before surgery, to help ensure that they will be strong enough to survive the procedure without complications.  This is what Samantha had.
• 32% of defects are a Ventricular Septal Defect (VSD).  This is an opening in the wall between the left and right ventricals, and usually causes a murmur.  Some VSDs will close on their own, others will eventually require surgery.
• 6% of those with heart defects have Tetralogy of Fallot, a complex and very serious anomally that generally requires immediate surgical intervention.
• Two others, each occurring as 1% of heart defects associated with Down syndrome, are Atrial Septal Defect (ASD) and Isolated Mitral Cleft.

When Samantha was born, not only did I know next to nothing about Down syndrome, struggling to digest that little revelation, but I was totally blind-sided by the visit from a cardiologist in my hospital room who came to drop the big, ugly, unbelievable bombshell on us that she would need open heart surgery in 3-6 months.  No new mom really needs to hear that.  No parent, period, really needs to hear that!  I didn't even know that there were health issues that could be associated with Ds at all. 

Got my first lesson that day.

And in the subsequent days to follow, I discovered how wonderful it was to have not received a prenatal diagnosis.  As it was, I'd had a pretty nice walk-in-the-park of a pregnancy.  No complications, no stress, no worries.  Seriously, if I'd known all of that ahead of time, I think I would have hidden under my bed, a quivering blob of...uh...blobbiness, incapable of speech or rational thought.  I stand in awe of those that can take and digest that information prior to the birth of their babies, who can arm themselves with knowledge and begin their advocacy bright and early.  With the new prenatal testing that's out there, the world will need so many more of those of you who can use the information to prepare, not terminate.

And I exaggerate - I'm sure I would have managed just fine with early info, but I can say with so much certainty that ignorance truly can be bliss in some situations.  :-)