Our son was born in Feb. 2002, and diagnosed with a severe murmur in April. Root cause was ALCAPA, which was caught and surgically re-implanted correctly. Ischemia to the valve left it with scar tissue. He remains on several meds, incl. Lasix, Prevacid (for reflux), aldactone, analapril, and sodium. Valve leakage remains "significant". Our physicians tell us as long as he is growing, we are okay. When fatigue sets in or he stops growing, the valve will have to be replaced. They anticipate that point in 5-6 years, but would prefer to wait until he is in his early teens.
My question is, how durable are mechanical valves? Is there a preference (besides avoiding another surgery) in using an adult valve versus a child's valve? And, will he be limited in activities with the valve? We have already been told that organized sports are out, as are any contact sports. Blows to the chest are not allowed. After the valve replacement, will any of this change?
Sorry to hear of your family's difficulties. This question is out of my area of expertise. I would recommend that you see a pediatric cardiologist at a major medical center to go over your very valid questions.
There is a wonderful peds cardiac surgeon at Johns Hopkins named Dr.Duke Cameron and he would be able to answer all your questions.He is internationally known and is Chief of pediatric cardiac surgery,Chief of Transplant teanm,Director of Cradiac surgical ICU as well as Assistant professor of adult cardiac surgery at Hopkins.He did my valve and I beleive he is one of the most knowledgeable individuals you will ever meet.He will talk with you by phone or by e-mail.Good luck
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