I have gotten quite a few hits and comments lately about the post I did on WC's hemangioma and the
pictures I took as it ulcerated and ultimately healed. I also posted several pictures of her H showing the
scar revision surgeries we have done over the past year.
Several people have asked for advice and I want to do an overview post.
First of all, not all hemangiomas will ulcerate. Ulceration is caused by rapid growth, and as this happens, if the overlying skin is unable to handle the growth, the skin will break open and ulcerate. Also, not all ulcerations will get infected. WC's never did.
Typically, most doctors recommend a "wait and see" approach if the H is not ulcerated and does affect breathing, eating, or vision. So if you don't fit in these categories, you most likely won't need to see a specialist.
Some doctor recommendations I got:
Dr. Zide in NY
http://www.hemangioma.com/He is a pediatric plastic surgeon. He did surgery on a baby I know of who had one above her eye because there was danger of it affecting her vision. If you email him a picture, he will give you his opinion. He is very hesitant to do surgery if it is not needed. He told us he would not do surgery on WC because it wasn't needed at the time. He said he would rather wait and do a scar adjustment surgery later.
Dr. Waner in NY
http://wehealnewyork.org/services/vascular_Birthmarks/Dr. Waner is pretty much the pioneer in the field.
Dr. Levitin
http://www.birthmark.org/node/152When I chatted with Dr. Levitin he was in NY with Dr. Waner but it looks like he was relocated in LA. Levitin will give his opinion via email- You may reach Dr. Levitin via email at
drlevitin@gmail.com, through his website at
http://www.vascularbirthmarkcenter.com/.
Dr. John Burns in Dallas - this is who we ended up using
http://www.kidsplastsurg.com/vascular.cfmDr. Burns is a Pediatric Plastic Surgeon who specializes in vascular abnormalities. Really, I think they are the best kinds of doctors to see for this. I don't know that they will give opinions from pictures.
Dr. Buckmiller in Arkansas
http://www.otolaryngology.uams.edu/vascular/index.aspDr. Buckmiller trained under Dr. Waner and gave us an opinion via email and suggested that we wait to get a better cosmetic result, since the ulceration had healed.
Here is the email address I sent the pic to to get an opinion from Dr. Buckmiller.
BussardDianeM@uams.edu Diane Bussard
Here are a few online forums that are helpful:
http://www.novanews.org/http://www.novanews.org/NOVAPhysicians.htm list of physicians by state
http://www.birthmark.org/ Vascular Birthmark Foundation
I know I overloaded you all with links- hope some of it is helpful! If you have other questions, ask away.
So here's is what I would do if I had a baby with an ulcerated hemangioma:
Email Dr. Zide, Dr. Levitin, and Dr. Buckmiller and get opinions from them. Also try to see a doctor in your area that is on the VBF or NOVA recommended list. My experience is that it is best to see someone who specializes in vascular birthmarks- we settled on a Pediatric Plastic Surgeon that specializes in vascular birthmarks and I feel good about that.