Eva, and every child born with a CHD, needs your help.
My baby, Eva, was born with a congenital heart defect (CHD). She was born with a leaking mitral valve and an ASD - a hole in her aortic valve. We were told when she was born that if you were going to have a baby born with a CHD (one in 100 are), and that baby needed an open heart surgery (OHS), "this was the one to have." "She'll only need one OHS," we were told. "One and done."
Eva had her 1st OHS when she was 18 months old, in 2012.
But after Eva's 1st surgery, she developed a side effect from the problem. She started to develop sub-aortic stenosis, which pressed against her already compromised aortic valve.
So she had her second OHS in January, 2015. When she was 4 1/2.
And then she developed stenosis again. Third OHS was in April, 2018. In between 1st and 2nd grades, at age 7 1/2.
Not surprisingly, the stenosis is back. And now, because that valve is so compromised, it's leaking. And because it needs support, we need to put a conduit in the valve.
Fourth OHS is in the future. Probably 2-3 years. She'll be 13 or 14. We're trying to hold off for as long as we can because those conduits, you know - they don't grow. So we want to wait until her heart is as close to adult size as possible. She's going to need to replace the conduit every 10-15 years as it is (they also don't last); it would be better if we didn't have to replace it before she's 18 because she's outgrown it; she's looking at enough subsequent surgeries after she's 18. Best case scenario is one before she's 18. And then however many after.
If you know Eva, you love her. She is a WARRIOR. She doesn't back down from a fight, and certainly not from this one. She laughs for no reason (seriously. You look at her and she laughs.) She loves her family, her friends, and all animals. She loves fashion. She loves design. She's good at math. She just got her ears pieced.
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