Just a quick note to say hi!
My 14-year-old daughter has TOF with Absent Pulmonary Valve. She's doing very well and is followed at Children's Hospital of Pittsburgh. She has no restrictions and is just a normal, sweet girl. She had her first repair at 4 months of age, then again at 7 years. Your note was the first I have seen about life expectancy for kids after repair. It makes me so sad to think that her life may be shorter than normal. When asking doctors the same question you did, we've always heard something like "it's much more likely that she will die of something else before her heart gives out."
I have learned of a man that has the same condition and is 51 years old. I will soon call him and let you know what he says. He is very involved with young heart patients in our area.
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