Hi Leanne

Mistyfying - does your little boy have any ongoing problems?? does he need medication or any future operations? and you mentioned his defect was considered severe - could the u/s scans with the experts tell you this, the severity?
My son has a paralysed vocal cord from the first operation. It hangs in his airway and vibrates when he gets puffed (and makes a heavy breathing noise). So far it hasn't impeded his oxygen intake or anything, or his speech as his false vocal cord has compensated. He visits an ENT specialist once a year to monitor this (he can have an op to tie the cord back if it starts to impact on him). He visits the cardiologist once a year to check the repairs made to his heart. There are no issues with the repairs of the holes, but they're monitoring the narrowed artery very carefully as they repaired it with a synthetic material and if his body doesn't compensate and expand the artery at the "normal" growth rate, that would have to be re-operated on at some point. So far, so good with that.

He doesn't have any medication, but will have to have antibiotics should he ever need dental surgery.

The u/s experts can't tell you with 100% accuracy how severe a baby's condition is (my son's condition was only truly seen once his circulation started to work when he started to breathe air). In fact, they were obviously very concerned about the left heart syndrome, but not at all worried about the "slight heart murmers caused by tiny holes". In actual fact, the left heart syndrome was completely rectified by the time they did a subsequent scan, and the VSDs were far more severe than they had anticipated. Hence the basis of my claim they cannot tell 100% how severe a baby's condition is.

Hope that helps, Leanne.