Skybie, my SIL has it- pm me if you want her story, she's 32 now and just had her 3rd op. First was at 8 weeks, then 8 months...then at, well 32. She has just received a new valve and all is terrific. Even with the condition she is an outdoor sports queen, a great surfer, rock climber and runner.
But yeah, pm me if you want the full story.