Hi and welcome!
What an ordeal. I can't even think of words to say ... oh.my.god.
Never heard of a hemangioma being treated with compression. Other vascular malformations, yes. But never heard of treating a hemangioma that way.
Where are you? We really need to get you connected with a specialist somewhere. From your writing, I would think Europe. Is it possible for you to travel? If so, where?
They now want to try compression treatment. Vacuum pack her whole birthmark for a week,, walk around attached to a battery pack I have to wear...so we can't be more than a meter apart...for a week...
Really? I think I would have to tell them that she's not a hunk of cheese. Who can be no more than a meter apart for a week?
Mind is swimming over here. Write back quickly.
Also, copy and paste your WHOLE story there and go to http://birthmark.org/experts.php
and send it to Dr. Levitin.