We spoke to his primary cardiologist last night and have a reprieve on intervention. Basically, he said that in young children who are too small for the smallest adult size valve replacement the decision on when to intervene is a matter of balancing risk.
The risk of any procedure on a child who has had multiple surgeries and caths vs the risk of an "adverse event" due to the untreated stenosis. Adverse event = passing out or having an arythmia / heart attack.
Apparently, the risk of 'bad things happening' doesn't increase suddenly once you reach the threshold for critical stenosis. Instead, its a steady increase.
However, there is no cure for the AS that is either permanent or risk-free at this age.
So, we get to make a judgment call balancing the risk of leaving the AS to progress vs trying a cath on an aortic valve that is already bicuspid, has had prior caths, has scar tissue from OHS repair and sub-aortic resection. OR going to OHS for a valve replacement that in itself creates a more difficult replacement event in future.
We have decided to wait 6 months (and make an overseas trip) with our friend the critical aortic stenosis.
I asked if it was crazy and the cardiologist says he thinks that will be fine.
We checked heart wall and heart size and its only minimally enlarged so apparently that is reassuring as they would not expect sudden changes in 6 months at this age.