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infant mitral valve replacement

  My 7 month old daughter was born with a large VSD and a deformed mitral valve (one leaflet was large and floppy, the other small and rigid). She had surgery to repair her vsd and the surgeon also did some repair of her mitral valve, but it has continued to leak. She is scheduled to have the valve replaced on Feb 8. (the surgeon does not see much hope of doing any repair to it at this point). We have been told of the risks. The surgeon said that there is a 20% chance that she will not survive the surgery. This of course terrifies me, plus the fact that he said that this type of surgery is rarely done on an infant her age. She has failed to thrive since her last surgery, weighing only 10 pounds. She had a severe reflux problme following surgery, but seems to be past that. She does not vomit any more, but can not eat more than an average of 18oz per day. Anyway, my question is...do you know about how many infants have such a surgery per year? Do you know where I can find out more about other infants who have had such a surgery? Is her risk higher than that of an adult with similar problems simply because of her age? Your response will be greatly appreciated.
Dear Julie

This sort of surgery is uncommon. Her risk is indeed higher because of her age. Your surgeon was being honest in his estimates for possible bad outcomes. Your own hospital probably has support groups for parents of infants that are very ill.
I hope this has been useful. Feel free to write back with further questions. Good luck.
Information provided here is of a general nature.  Specific diagnoses and treatments can only be made by your doctor.  If you would like to be seen at the Cleveland Clinic, please call 1-800-CCF-CARE for an appointment with a cardiologist at Desk F15.

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