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FORUMS > Congenital Heart Disease
Replying to Topic: Leakage
Created On 12/18/04 10:23 PM by GamZuLetovah


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GamZuLetovah
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12/18/04 10:23 PM
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Hi,

My son had open heart surgery about a year ago to fix a complete AV Canal. He has Down Syndrome. Everything went fine B"H and He recovered very well. We took him last week for a follow up visit to the cardiologist who took an Echo and she says that leakage has worsened from the expected minimum. She put him on Enanopril (not sure of spelling) to try to keep it from getting worse. She said that if it does get worse he will require more surgery to correct the leakage.

Did anyone here have any similar experience? Any information would be greatly appreciated.


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The sun is always shining! There are just times we don't see it.
 
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bmr
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12/20/04 9:33 PM
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Boy this sounds familiar!
My now 15 year old (!) son had an a-v canal repair at 5 months, was left with a mild residual "leak," did well until about 1, then spent the next year sick with recurring pneumonias. At 2+, he was found to be in heart failure. His leak, too, went from mild to moderate-severe (mitral regurgitation). He went back on dig, lasix, spironolactone, and a few years later enalapril (I think that's what you mean) was added. He's doing great since. Pretty much status quo on his bi-annual echo. Yes, he faces valve replacement surgery in the future. Thanks to his very very minimal growth (he's now 47# and 47" - about the size of a 6-7 year old), the surgery hasn't been necessary yet. The meds seem to keep him ticking...
 
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UpsWithDown's
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12/21/04 10:22 AM
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Mrs. Gam Zu,
Just curious....what did your cardiologist say about the leakage? Did she say how that can happen post-op?? hmmm...Hatzlacha and refuah shleimah. Can all of you that need surgery for your children give me their names so I can daven for them? I feel in your situation and would love to daven for them when I daven for my son.


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*Haboteach BaHaShem chessed yesovevenu*
 
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GamZuLetovah
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12/21/04 11:26 AM
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We were told that this is always a possibility I think the reason is because the heart is deflated when they do the surgery and they have no way of checking for leakage at the time of surgery. I think that minimum leakage is normal but now it went somewhat beyond that minimum.


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bmr
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12/21/04 3:43 PM
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As I understood it from my cardiologist, some residual leak is normal. The repair around the valve can only be done with existing tissue, not like the goretex patch on the ASD. And they just can't prdict everything - like how the spot will hold up - as the child and the heart- grows.
 
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mimi
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1/12/06 2:23 AM
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Hey it's good to see I'm not the only one with leakage after surgery. I'm 21 and just recently gave birth to a child after pushing for 5 hours. I gave birth in Columbia, because my cardioligst told me that I needed a high risk. Originally I had to beg the doc to let me push, in the end boy did she let me push, I pushed for 5 hours. B''H, my heart was not affected, that goes to show, our hearts are stronger than we think.....
 
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Lev16
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5/18/07 5:05 AM
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My daughter was born with a condition called Ebstein's anomaly. She has moderate to severe leakage of her tricuspid valve. She is 3 months old. She has no symptoms so they are not planning any surgery yet. Has anyone here had a valve repair?
 
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FORUMS > Congenital Heart Disease

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