My 13 month old daughter was born with a primum and secundum ASD and with what they thought was a cleft mitral valve. At age 8 1/2 months (last October 27,1998) she had surgery to repair the holes and mitral valve. Once the surgeon, Dr. Rodolfo Neirotti, saw the valve, however, he realized that it was not a cleft mitral valve, but was instead deformed with only one set of papillary muscles. He tried to repair the valve and post-op, it seemed to be functioning normally. One month after her surgery, her cardiologist heard a murmur again and did an echo only to discover that her valve was leaking on the right side where the pericardial patch was sewn in. Now, 3 months later during her routine visit to the cardiologist, he did another echo and said that the valve is leaking still on the right side as well as in the center. She now had moderate mitral regurgitation. We were given some disturbing odds on a mitral valve replacement for our daughter...33% chance of doing better, 33% chance of staying the same, and 33% chance of doing worse. He also said that they would wait until she had severe regurgitaiton before they would do anything for her. I failed to mention that she is not growing well...she weighs 14 lbs 4 oz at almost 14 months of age. Other than her slow growth (she is not even close to being on the growth chart for weight, but is in the 10th percentile for height) she is asymptomatic. We are obtaining a second opinion at the University of Michigan Medical Center on May 17th with Dr. Armon Rosenthal. Obviously my daughter's case is not cut and dry due to the papillary muscle dilema. I heard about your hospital from an adult congenital heart specialist, but I have no idea if your hospital specializes in pediatric CT surgery. I want a doctor/hospital who specializes in my daughter's condition and am not sure how to find them. Do you have any thoughts on my daughter's condition and/or how to find a reputable doctor who is world renowned for mitral valve sugery? Do you know if a procine valve would work efficiently with only one set of papillary muscles? From what I've read, a mechanical valve seems pretty risky. Most information seems negative...coumadin, catastrophic failure, infection...Obviously, I would never want this for my daughter when the porcine valve seems a much safer route. Am I somewhat correct in my assumtions? I apologize for writing a novel. Any info would be much appreciated. Thank you for your time.
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