Lindsey - posted on 03/22/2009 ( 5 moms have responded )
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I was wondering if anyone out there has a heart child with this or knows someone who does? Our youngest son Nate is having open heart surgery in June to help repair this and I was wondering if maybe someone could help with what to expect.
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Katy - posted on 06/30/2009
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My son has Ebstein Anamoly, we were told that eventually the valve will have to be replaced, other then that we have no clue what to expect with this part of his CHD, he has many other issues we've talked more about then this one.
Rachael - posted on 06/18/2009
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Hi Lindsey -
Our son had his first heart surgery a week and a half ago. He is still in the pediatric ICU. One thing you can expect is that after surgery, your child will be sicker than he was before surgery. This is really scary. I've been documenting what's been going on with our son to update our friends and family using the Notes application in regular facebook. If you would like to read them, you're welcome to friend me on regular facebook and get the details there. Otherwise, good luck and blessings to you and your child.
Rachael - posted on 06/04/2009
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Hi Linsey -
My son was born with Ebstein's Anamoly type defect three weeks ago. I say type because it's a little different than the regular ebstiens, but it's being repaired much the same way. We are going through our first of three open heart surgeries on Monday morning. After that, I will be in touch to let you know how it goes. I'll answer any questions I can. Talk to you soon!
Veronnica - posted on 03/23/2009
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Oh, I can hook you up with worldwide Ebsteins communities if you're interested as well... They all say that Ebsteins is different with every person, but Most of them have been through surgeries, either with their children, or themselves...
Veronnica - posted on 03/23/2009
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Hi! My youngest has Ebsteins, she's 15 months old, but I can't help with what to expect as we've been told she wont need surgery for several years yet... Is he having a Glenn shunt put in or replacement of the valve? (I think they are different!)
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