Hemangioma or Port Wine Stain? - Vascular Birthmarks Foundation Forum
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  #1  
Old 02-14-2013, 05:24 PM
jojo4inlove jojo4inlove is offline
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Default Hemangioma or Port Wine Stain?

Our baby girl was born on 01/26/2013. The flaming red birthmark didn't come into our notice until day5/day6. Or maybe earlier but definitely not at birth. Attached are baby pictures at birth and on Day12.

A ped derm told us it's segmental hemangiomas not Port Wine Stain, just because baby didn't have the flaming red mark at birth. But my daughter's birthmark is really flat, which doesn't look like most pictures I've even seen for Hemangiomas. And if we look into the pictures at birth carefully, we can see some pale/pink discoloration (not flaming red) in that area. I'm wondering could this be Port Wine Stain?

Hemangioma could fade away as it's nature process but Port Wine Stain is permanent. If it is PWS, we don't want to passively wait and miss the best timing for treatment.

Any opinions?

Thanks!!!
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Old 02-14-2013, 05:27 PM
jojo4inlove jojo4inlove is offline
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BTW, my daughter is currently using Timolol. If it's truly a hemangioma, based on the large size, how long it'll take to see some differences?
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Old 02-15-2013, 01:30 AM
smurph smurph is offline
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To me, it seems like a hemangioma. It looks very similar to my daughter's. Here's some pictures for you to see:

http://www.facebook.com/media/set/?s...0902383&type=3

Hers was not present or very, very light at birth. She was in the NICU and I didn't even know about it until about a week later when the nurse showed me. I knew what it was immediately because my older daughter had one on her lip and we had been through all this before. It looks like your daughters extends further up her arm than mine. At the time, our specialist did not recommend any treatment. He said that hemangiomas in that location tended to do very well. (I trusted him because he had treated my older daughter's lip hemangioma, 8 years ago, pretty aggressively with oral steroids from 10 weeks of age to 10 months...so I felt like he had a good sense of when to treat and when not to.) My daugther's hand/wrist hemangioma went away totally on its own!!!!! I would never have believed it, but it happened. She is 4 now (on 1/28) and it is just a faint shadow. I can see it only because I knew it was there.

So every hemangioma is different so you never really know what to expect, but I just wanted you to see that it is possible to have really good results with minor intervention. We didn't get the chance to used Timolol, so I'm not sure what you can expect with that. But hopefully she will do very well. Keep in touch! I will try to post a picture of what my daughter's looks like now. Take care!

Shannon
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Last edited by smurph : 02-15-2013 at 01:35 AM. Reason: clarity
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  #4  
Old 02-15-2013, 01:39 AM
smurph smurph is offline
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Not that I'm against more invasive intervention...because my older daugther had surgery and laser as well! It's just that it really depends on the hemangioma! So if it ends up growing more and is more concerning because it covers a large area, at least you are having it treated and monitored by a specialist early on and you can see what options are available. Good luck! Keep us posted!
Shannon
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Last edited by smurph : 02-15-2013 at 01:44 AM.
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Old 02-15-2013, 01:47 PM
jojo4inlove jojo4inlove is offline
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Thanks Shannon! Rachael has beautiful eyes and she is so adorable. I'm so inspired by her story. YES, you can barely see anything on her hand now! The size of my daughter's H is very large. Hopefully we can see good results very soon.
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Old 02-21-2013, 04:28 AM
jennr11 jennr11 is offline
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Just saw this thread and when I saw your pictures it took me back! Your babys arm looks just like my little girls did almost a year ago. I would say it is a hemangioma as well. At birth, our daughter had a faint, flat, sort of discolored area on her arm and within a few days it started turning more pink and then progressing to red. Long story short, it took 2 1/2 months to get an appointment with a pediatric dermatologist and her hemangioma grew rapidly within that time. We started Propranolol at 10 weeks and we could see it working within the first week. I feel like the earlier you can start some form of treatment the better. Had we gotten on the medicine quicker I feel like our daughter would have been saved from a lot of pain and complications from her ulcerations.
Keep us updated! Let me know if you have any other questions or would want to see any other pictures to compare to since their birthmarks are in the same area and so similar. Good luck!
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