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H's Story


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  #1  
March 7th, 2009, 03:52 PM
Platinum Supermommy
Join Date: Oct 2004
Location: *queen city* of North Carolina
Posts: 9,497
I thought I typed this already - but I guess not!

Hailey was born 6.22.06. Everything went find during pregnancy no "red flags" really of a heart defect. During pushing her heart rate dropped drastically during contractions/pushing but nobody really thought anything about a heart defect (although my OB wanted her out ASAP or it was an emergency c-sec more then likely).

When she had her first peditrition visit at the hospital on 6.23 (morning) they noticed a lot of noise in her chest and were sure what was causing it and ordered an EKG and echo. She was 23 hours old when we found out she had a heart defect. She's got aortic stenosis. Thankfully, it is very mild. At first we saw the cardiologist every few months until she turned one - and since she was still very mild and no symptoms we've gone to yearly appts. She doesn't have "true" aortic stenosis. She has all three leaf lets, but only 2 function. So its really functioning bicuspid aortic valve/aortic stenosis.

One day she will have to have opening heart surgery. Right now they are saying in her 20s. She also has some sport limitations (no football or high contact sports). So we're just monitoring right now, and if we notice symptoms like shortness of breath or overheating at odd times to bring her in ASAP. Otherwise, she's a typical kid. Its a true waiting game. And its nothing that can be fixed, just balloon cauterization of the valve or valve transplant. The balloon procedure is only a temp fix too. So we'll see what happens as time goes on. I'm hoping technology will increase and have a better way that doesn't involve transplant.
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  #2  
March 10th, 2009, 05:46 AM
stacyp's Avatar Mommy to Andrew & Luke
Join Date: Nov 2005
Location: OHIO
Posts: 17,229
Thank you for sharing your story. I am so glad she's doing well!
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