Re: Hole in heart (VSD)

Posted By Jeri on April 23, 1999 at 16:11:37
Our daughter, now 11, was diagnosed with a VSD at birth.  The original cardiologist followed her from birth to age four, and was more encouraged with each yearly examination that the hole would close on its own.  We moved to another state when she was four, and began seeing a different group of cardiologists.  For the next four years, they concurred that the hole was closing satisfactorily and was no longer "significant."  In fact, we were told that about the only difference between our daughter and a child without her condition, is that she needs premedication for dental visits.  Our daughter has always been extremely active and never showed any signs of distress from this condition.  When we moved to Illinois when she was 9, however, the new cardiologist said she was a "borderline"  and encouraged us to consider surgery to repair the hole.  Apparently, he felt that her heart was slightly enlarged and the hole required fixing.  
We then sought a second opinion outside the group.  This doctor seemed very hesitant to make a judgment one way or the other, and encouraged us to have a heart catheter so that the pressure of the blood flowing between the chambers could be more accurately tested.  He did say that her heart was slightly enlarged for a child her age, but felt that the enlargement could have occurred when she was younger and the hole was bigger.  If that was the case, her heart would always appear larger than normal, but would not indicate any current problem due to the hold.  We understood that the catheterization is an invasive procedure, and that the risks, although minimal, could be severe.  
We also sought an opinion from our original cardiolist, who agreed to review her current records.  He disagreed with the opinion favoring surgery, and told us her echo and x-ray supported the finding that the hole was now insignificant and required no treatment.   Obviously, we would like to believe his report!
It is a year later, and our only action has been inaction!  Her next exam is coming up in May, and we're already stressing out about how to know which opinion is accurate.  Also, before we'd ever consider open-heart surgery, we would like more information on this umbrella procedure.  Could it be used to correct a VSD?  Any information you could offer would be most appreciated.  

[Lisa__0__0]

Posted By Lisa on April 23, 1999 at 22:26:34
From personal experience, I think the umbrella procedure is great.  My now 9 year old daughter had this procedure done by the doctor who pioneered it in
Boston's Childrens Hospital.  Shortly after Melissa turned 6, her team of cardiologist and surgeons concluded that her only hope was a heart transplant;
talk about terrified.  We pressed for a second opinion and was referred to Dr. James Lock in Boston.  With 5 overlapping seals, Melissa had 9 holes closed in a non open heart procedure.  And one of those vsd's was larger than a quarter.
After 2 days in ICU and 1 in a regular room, Melissa flew home with only 2 meds:
one was an antibiotic and the other was a diuretic.  In less than six months,
my 39 pound  7 1/2 year old became a 56 pound 8 year old.   This operation has been in FDA approve trials since 1990.  And even though some consider it unimportant, this is no big zipper scar for little girls (who become teenagers) to resent.   Please feel free to email if you have any questions I might answer. Good luck in any decision you make.











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Hole in heart (VSD) CCF CARDIO MD - CRC 4/26/1999
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