Question about H on the finger.

[Maher2006]

I just found this website while i was researching my daughters hemangioma. She has one located on her right index finger at the first knuckle. When she was born it looked like a freckle. Just a little dark spot. No big deal to use until it started growing and hasn't stopped. She is almost 3 and it is still growing. I have taken her to Doern Becker children's hospital in Portland and from there to a plastic surgeon at OHSU also located in Portland. He has told me on 3 different occasions that it should stop growing. We first took her in at 6 months and he said by one it should stop, by 1 1/2 it was almost double the size so we took her in again. He then told us don't worry lets wait tell two. It really should stop growing by then. Well it didn't. we then took her in again at 2 and he said yes i see its still growing. Lets wait until 3 and see. It should REALLY stop growing by then. Again like I said it still continues to get bigger. We discussed the procedures that would happen if we did have it removed. The Plastic surgeon said he would either surgically remove it but is afraid scare tissue will build up in the knuckle causing her to have issues with movement. The other procedure he was talking about was steroid shots directly into the H itself. But again with this procedure he is afraid it would cause damage to the nerves leaving her finger unable to function properly. The H has now started growing back towards her hand and is growing around the the underside of her finger. I am at a loss. I don't know what to do. The H takes up half her tiny little finger and I'm afraid if it keeps growing it will take over her whole finger and possible grow down her hand. As of right now it is 1/2 inch long and stands off her finger about a centimeter. It has also gotten really hard. Where as before it was squishy. If there is any one with any advice, I would really appreciate it. I just don't know what to do. I have added some pictures for you to get an idea at how big it is. And as I said before when she was born all there was, was that tiny little dark spot that has grown into what you see in the picture.Picture 001.jpg

Picture 002.jpg

[missy]

Honestly, I think it looks like it is about to start involuting. Has your doctor mentioned that? That is what usually happens with involution... the birthmark goes from squishy to hard and develops a gray center.

Other parents, though, will post their opinions soon.

Missy

[Maher2006]

The Thing About it having a gray center is that is has been that way from day one. There has been no change in the color or anything like that it just keeps getting bigger.

[missy]

Cool... I don't think I've ever heard of one that started out gray. The change in texture might be significant though.

Has it ever bled from being bumped?

Missy

[Maher2006]

No we have never had any issues about it bleeding and she has never really bumped it or cut it enough for it to bleed.

[nickbar]

I posted to you on another thread. Please email me. I have some questions about your daughter's vascular lesion. I am suspicious that this is not a hemangioma. I can also give you a name of a specialist in Portland that treats vascular malformations if in fact this is not a hemangioma (he is at Providence). Did you ever meet with Dr. Krol at OHSU?