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| Million Dollar Babies Hypoplastic left heart syndrome babies |
| Public online group |
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I'm going to attempt to explain truncus...
Truncus is a rare heart defect (1% of CHD's) where there is one "trunk" that leads out of the heart instead of a pulmonary artery and an aorta. There is also a large hole between the bottom two chambers of the heart (VSD). Oxygen-rich and oxygen-poor blood mix within the heart. If not corrected truncus causes congestive heart failure. 85% of babies with truncus die within the first year if not treated. About 33% of babies with truncus have a genetic problem called DiGeorge Syndrome. Many problems are associated with DiGeorge like kidney problems, learning problems, changes in facial features, cleft palate, etc. (Fortunately, after I had amnio done, we found out that Joshua did not have this problem.)
The main treatment is open-heart surgery, done a.s.a.p. after diagnosis. A conduit (Dacron w/pig valve) or homograft (donated human valve- this is what Joshua has) is sewn into the right ventricle on one end while the other end is sewn into the pulmonary artery. The VSD is closed. Surgical success for early repair is 90%.
More surgeries will be needed as Joshua grows because the conduit/homograft will not grow with him. Also, my son's truncal valve is narrow and has moderate-severe leakage. His valve miraculously has lasted him this long, as the doctors thought it would have to be replaced at birth. The initial cardiologist that did an echo on me (not the cardiologist at UM where I delivered) said this was the worst case he had seen. He also told me two other shocking things 1. that I could terminate the pregnancy and 2. another doctor may tell me they could fix the problem, but I would have to ask what the quality of life would be.
I'm here to tell other parents who are pregnant with, or already have a child with truncus, that there is HOPE. The doctors at UM gave me hope, for which I am eternally greatful! |
| Posted by Lisa on 01/06/2008 10:46 PM
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