Genetic counsellor can also help get information for you or get drs to explain thing properly. They can also give you info on amnio's etc. One of the main principles of genetic counselling is the right to personal autonomy (the right to make decisions for yourself) and being given appropriate information in a format you can understand to make the decsions is really important.

They may also be able to link you up with families who have also had bubs with similar conditions who might be able to give you tips on the surgery etc.