Today we had appointments with pediatric cardiologists at Seattle Children's hospital and Swedish Pediatric Cardiology - and two fetal echocardiograms done. It was a GOOD day.
As a result of these detailed scans and lots more investigation they have given us a much better prognosis than the full-blown HLHS discussed at our first appointment.
It now seems likely that the reduced left-heart measurements are due to an aortal problem - possibly an obstruction or narrowing. The baby has a full aorta (arch etc) but it is half the diameter they would like it to be (2.5mm v 5mm). If the aortal problem is the only one and is the case and the left ventricle and aortal valve remain at approximately 66% of the norm, then the baby will face either a heart catheterization or an aortal reconstruction (a single open-heart procedure) shortly after birth. If things go really well, he may not need the cath till a few months old but the ped card. said this was unlikely because there is quite a lot of turbulance in the aorta - suggesting some obstruction to flow. We may not know how much surgery he needs till after his birth so he will go to the NICU and be watched with a cardiologist on-call to do a diagnostic if/when he shows signs of heart stress. This is a MUCH better prognosis than any we were given before because after the procedure he would have a relatively normal 4-chamber heart and the odds for the surgery are 90%+ success.
The Children's Hospital cardiologist thinks that Seattle Children's Hospital surgeons would be fine to do this surgery but we are going to get other opinions on that when we are closer to delivery. Stanford remains an option if things are not their best. A surgeon in Portland and one at Mary Bridges, Tacoma, were also recommended - depending on the diagnosis nearer my due date.
Now, the worst-case scenario is that the left heart continues to fall behind and/or the aorta do not grow. Then we are back in the HLHS 3-stage open heart procedure. This is possible but LESS LIKELY NOW with the revised measurements!!!
We are going back in a month to 6 weeks for new scans and are desperately hoping that the left-heart measurements are holding up.
Also, he does not have digeorge syndrome! Yay. I am terribly terribly tired (each appointment took 2 and a half HOURS) and am going to bed early.