My son is almost 4 and has PHACES syndrome. Because PHACES is a relatively new diagnosis, there are less than 500 known cases of the syndrome. In addition it mostly being diagnosed in children because they are presenting with the symptoms. Had our doctors not recommended an MRI on my son at 3 months old we would have never known about his cardiac and arterial abnormalities, he would have just been been a baby with some hemangiomas. There are probably many adults with the syndrome who have never been diagnosed.
There are some great doctors who specialize in treating PHACES patients, I would recommend seeking out on of these doctors. Her hemangiomas seem consistent with the PHACES diagnosis, but the doctors would probably want more imaging done of her heart and brain before an official diagnosis could be made.
Hope this helps! Best of luck to you and your daughter.