"I have a 16 yr. grandson(whose mother is a member of your group) that had HPLS or has, she sends info in every year but we would like to know how we can find a publication or something that would tell us how the "older" kids are doing, when he was born the oldest surviving child was 15. He had the Norwood procedure, and has been doing great, last visit in summer to Dr. his BP was high, a valve leakage. We would like to know what is normal at this age, the web page gets too far off the track.