difsk123 (November 30, 1999 at 12:00 am)

i have this and got a surgery when i was 4 days old a couple months old and this august im 13

ANJEL602 (November 30, 1999 at 12:00 am)

i had a 17 year old family member die of this in 2001. she had one open hear surgery about 2 or 3 and that was it. but i heard ppl living long lives with this

gradius55 (November 30, 1999 at 12:00 am)

my 13 month old fell and hit her chin, causing her to bite down which caused one of her top teeth to cut her bottom gum. it only bled for a few minutes. i did not clean or put anything on the wound and the bleeding stopped right away. should this be of concern for endocarditis? she had tet repair at 4 months old.

hul5078 (November 30, 1999 at 12:00 am)

The doctor also said that my son had 2 fully formed superior vena cavas. I have searched on the internet for information about this. I was looking for a diagram that shows how they enter the heart when there are 2. As far as the pulmonary valve defect, my son was tested for DiGeorge syndrome but it came back negative. Is it rare to have this defect and not have 22q11 microdeletion?

hul5078 (November 30, 1999 at 12:00 am)

From what I understand, his valve was affected by the defect as well. The valve didn't form properly and grew along the wall of his heart. They removed the defective valve during the surgery. I never quite understood this part, but we keep being told he will need a valve later in life.

bassamakasheh (November 30, 1999 at 12:00 am)

Pulmonary valve replacement following tetralogy repair will be required in most patients who had a transannular patch (patch across the pulmonary valve ring). this is usually required if the Right Ventricular Chamber starts to dilate (enlarge). this usually takes 10 to 20 years. nowadays we tend to do this before the RV enlarges too much, as this will preserve the muscle function and offer much better aquality of life and less rhythm and failure problems. Good Luck.

hul5078 (November 30, 1999 at 12:00 am)

My 9 yr old had this at 15 months old. He also will need an artificial pulmonary valve at some point. I am hoping it takes awhile for him to need it so that the technology can continue to improve. How long does it usually take after TOF repair to need the pulmonary valve?

bassamakasheh (November 30, 1999 at 12:00 am)

Sounds good. The minimal VSD leak will probably close spontaneously in due course, the PA narrowing might need to be balloon dilated a little later this depends on the location and severity of the narrowing.

danish61493 (November 30, 1999 at 12:00 am)

Thank you for the commet back its very helpful. He had a 2D echo done just this past march, and his cardiologist said that he has min. leakage, and min. narrowing. I still am going to take him to another cardiologist. but what exactly does this say about now??

bassamakasheh (November 30, 1999 at 12:00 am)

Following total correction of TOF this should not happen, it may be nothing at all, however I think he should be seen by a pediatric cardiologist to do a 2D-Echo and make sure there is no recurrance of his pulmonary stenosis. good luck