Internal Hemangiomas with PELVIS syndrome
My daughter was born two weeks ago today, she is my 4th child. She was diagnosed shortly after birth with multiple internal hemangiomas with PELVIS syndrome. She has an external hemangioma between her legs that the Derm is watching for growth, she has a deformity of the bladder and spinal tethering, related to the internal hemangiomas, and is having a bronchoscopy tomorrow because she is exhibiting some stridor and as a result may have a subglottic hemangioma as well. The derm has not started her on propanolol yet, prefering to wait until the external starts to show signs of growth, although if we see a subglottic I guess that may change. That's our story, this has been an overwhelming two weeks as this was completely unexpected and resulted in a 9 day NICU stay and a battery of tests. I am glad to have found this community though and am hoping to draw some support from it!