Tuesday, February 26, 2008

Hemangiomas

I am re-posting this explanation of The Wild Child's Hemangioma for PickleLovingPrincess.


Above is a picture of the hemangioma on The Wild Child's arm at 5 weeks old. I wasn't thinking this was going to be that big of a deal, so I actually don't have any pictures from earlier in her life. It started flat and light red, but you can see by this time, it was raised and getting dark. The part in the middle that is purple is the part that was soon to ulcerate (break open). This when I realized I needed to start taking weekly pictures to document the rapid growth.

WC's H is most likely a Superficial Hemangioma (formerly called Strawberry Hemangioma) because it is located in the surface of the skin. They are characterized by a bright red color with a well defined border. These lesions may vary greatly in size, location and shape.

PickleLovingPrincess, you mentioned a Deep Hemangioma (formerly known as Cavernous Hemangioma), which is often larger than a superficial lesion. They are located beneath the surface of the skin and are characterized by a bluish lump or mass. They are generally soft to the touch.

It is possible that WC's was a Combined Hemangioma or Mixed Hemangioma, both deep and superficial. These may appear as a lump or mass in the skin with areas of red. They are often soft. We did not, however, have any testing done to see how deep it went so I have to assume it was just a Superficial.


This picture was taken at 17 weeks of age. The ulceration was at it's worst now, but beginning to heal. This was a stressful time for us- the ulceration was very painful and although we were fortunate that her H wasn't on her face as most of them are, but it was still in an area that was easily bumped (imagine threading those little arms into a carseat.....), which would start off a 2 hours crying spell because of pain that Tylenol didn't touch.

We also had some clothing issues because anything with a wristband was a problem, so I had a difficult time figuring out what to do about winter PJs.....

It was at this point that our ped finally agreed that we needed to see a specialist. Up until now we were told "We don't do anything for those, just wait them out and they will go away on their own." (oh-so-wrong I would later find out....)

To make a really long story a little shorter (you can email me for the long version if you'd like) we found a doctor in a neighboring state who was a pediatric plastic surgeon who specializes in vascular anomalies. He let us know that even if the H fully involutes, she will still be left with a cosmetic deformity because of the significant scar tissue that formed because it was an open wound for so long. So our plan at this point is to do a scar revision surgery after her third birthday.


This picture was taken when she was about 18 months old. The area in the middle that has a different texture is the scar tissue.

It is amazing how much it has changed and it's amazing to me how much I have learned. There were times when I felt so overwhelmed and didn't know what to do or where to turn, seeing as how I live in Rural America and we don't seem to have a lot of people around here who are helpful in these situations. I don't know what our parents did without the Internet.......

I do have a wealth of links and support groups/forums if anyone is ever in need of them. Just let me know and I'll be glad to share my resources!


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7 comments:

Kate said...

Wow - thats all I can say - wow! Abby's H isn't anywhere near the size of hers. Hers is about the size of a quarter. It started out flat and pink and looked like a scratch and quickly grew to ohhh about quarter sized with about 1/8 to 1/4" protusion. Its somewhat flattening out but is still pretty red. The Doctors warned us that it might ulcerate but we've been lucky because it only bled once and that was only mildly. They also warned us about cosmetic surgery for the scar tissue and extra skin when the H eventually goes away but they won't treat hers and after looking at your daughters, I can see why - Abby's is nothing compared to that. Thanks for sharing...its always scarey when your baby has problems (did I mention Abby's extra butthole??? :P She has a Sacral Dimple as well as the damn H) They are beautiful children!

Angry Julie said...

Sasha,

I can totally relate to WC's hemangioma in a personal way. I have two on my left bicep area. I'm 32 now. I will have to have Angry Husband take a picture for you. Mine look very similar to WC's, except more faded. I have never had any surgery on them.

morewineplease said...

I cannot believe those pictures! You must have been through hell! I am sure she is a very brave child.
My Ashton has one on her right should blade.. she is 9 now and its almost gone, but it NEVER got that bad, never any pain. Eva (my terrible 2) had one on her eye when she was born.. it got bigger in the first couple months, but was thankfully gone by the time she turned 1.. I never did any research, do you know what causes them?

Mamalicious said...

Bless the Momma, that must have been so stressful for you. It sure looks great now!

PickleLovingPrincesses said...

Thank you so much for posting the whole explanation. What an ordeal for your baby to go through. Adalyns is on her back (weird because they said most are on the face) and only protrudes slightly. We did see a plastic surgeon and they were no help. We were told it either will or will not go away, it will either get bigger or will not get bigger, and she could burst it if she falls hard on it or gets hit on it. I don't want to get it removed unless its hurting or bothering her. I worry because her bra will rest on it. They say some of her vessels are as thin as piano wire and some are as thick as a pencil. I took some pictures tonight for the first time (bad mommy, shes 2) and it does look as your daughters does now.
Best wishes to you all.
Thanks again!

Sasha said...

morewineplease, I have read that there is a theory that the H is a piece of placenta that became dislodged and attached itself to the baby in utero.

I had some unexplained bleeding (even passed a clot) at 19w8d, so I will always wonder if that had anything to do with the H.....

Lori said...

Poor little WC, that looks so painful, but also looks like it's improving.

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