Laura Maher, United States (US), Virginia
My daughter, Reagan, was diagnosed with a large, compound, segmental hemangioma of the scalp with a portion abutting the spinal dura at 1 month old. After being thoroughly tested for and cleared of PHACES Syndrome, she has taken Propranolol for 13 months. We experienced several ulcerations, full sedation for MRI/MRA, a cardiac consult and testing, a neurosurgeon consult, and over a dozen dermatology consults. Her hemangioma is now in involution, and we are beginning to wean from Propranolol and look forward to the next stage of our journey – helping others advocate for their children and care for all children with vascular birthmarks.
