Tuesday, February 9, 2016

#CHDawareness

Congenital heart defects are present in 1 in 100 babies.  When Caroline was born, I held my breath as the nurse checked her pulse ox and said, "98" or "99" or some number in the high 90s. You see, with Ellie, we knew about her ‪#‎CHD‬ in advance. We knew that Caroline didn't have Down syndrome, lowering her odds of having a CHD. But we didn't know with certainty that Caroline's heart was healthy until the pulse ox.

For babies with Down syndrome, the odds of having a heart defect is 1 in 2, not 1 in 100.

Half.

Including Ellie.



When Ellie was a baby, I would look at pictures of kids who had been through open heart surgery and tell myself that Ellie would look strong like that someday, too.

All of these kids had heart surgery.

Look at them now.

You may notice a lot of girls very close to Ellie's age.  Cora, Hailey, Emmrie and Ellie were born about the same time, and the moms spent a lot of time emailing and messaging each other words of encouragement on this journey.

















All those broken hearts, now healed.

Heart surgeons, especially pediatric surgeons, are true miracle workers. 

Want more info?  Here's the CDC page on screening.  Ellie's heart defect is not considered a critical CDC, although we do not know if she would have survived her first year without surgery.  We can say with confidence that we would not be preparing to celebrate the fifth birthday of our energetic girl.

We love you Ellie - And all your heart buddies!

And now, some photos of Ellie so you can see how her scar has faded.







And just for fun:



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