Odds are...

My brave little boy just after his open heart surgery

1 in 14,000: Odds of being born with CHARGE syndrome
1 in 10,000: Odds of being born with a coloboma, a "cleft" of the eye
1 in 5,000: Odds of being born with a facial palsy
1 in 500: Odds of being born with a hearing impairment

1 in 100: Odds of being born with a congenital heart defect

1 in 100.  1%.  While thinking about those odds, I found it interesting that I was tested for a number of birth defects while pregnant with Ronan that had far, far greater odds.  I had more testing than most women, due to some family history and other factors, and everything came back perfect.  Spick and span.  One thing that Ronan was never evaluated for while in utero or just after birth was a congenital heart defect. 

Like I mentioned and like most women, I was tested for many other disorders and syndromes that were far less likely.  I looked up those odds today.  1 in 16,000.  1 in 5,000.  1 in 18,000.  1 in 800.  Even more interesting was that Ronan was tested for a hearing impairment while in the hospital.  All children born in the state of California are tested.  For those of you who may not have noticed this test, it isn't quick.  It requires additional resources from the hospital.  Specialized equipment.  A person trained in how to use and interpret the equipment and results.

Ronan was not tested for a congenital heart defect.  The very defect that was most emergent for him, the very defect MOST likely.  Does anyone else find that a little insane? 

I've heard some of the arguments.  The cost of a false positive is high.  An echo is a couple hundred dollars.  Small price to pay for ensuring the safety and health of a child, especially for a birth defect as prevalent as a congenital heart defect.  We already spend money to test hearing, to test for other syndromes less common.  Why not test a child's heart?

The CDC estimates that a pulse oximetry test (pulse-ox) would take between 1 - 5 minutes, and cost between $5 and $10 dollars per baby.  It will not catch all congenital heart defects, but it targets critical congenital heart defects.  It tests for those defects that require surgical intervention soon after birth.  There are seven critical heart defects that would be caught with this simple test.  Those seven defects comprise 31% of congenital heart defects. It is a test that is slowly being added to newborn screens.  Please check it out here: http://pulseoxadvocacy.com/

As parents, we do all we can to protect our children and keep them healthy.  Why not test them for a birth defect that affects one in every 100?