17 answers

AV Malformation/Hemangioma????

Hi all. I gave birth to twin boys last week and they are wonderful! Well, there is one thing. My second born has a large mass on his knee that is shaped/sized like an egg. One doctor called it a hemangioma (sp?) or an AV malformation which is basically a birthmark on steroids. Have any of you dealth with this before? If so, please give me very detailed info on what had to be done. I want to know the good and the bad but please tell me everything!

What can I do next?

So What Happened?™

Thanks for all of your replies and thanks for being honest in your responses. We went to Scottish Rite for tests and we will be seeing an orthopedic surgeon soon. I'm nervous but hopeful about all of this. Thanks again!

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When my daughter was born, she had a small red spot on her side. By the time she was 6 months old it had grown to the size of a quarter. My pediatrician said it was a hemangioma and would go away by the time she was one. Well, she was more like 2 1/2, but it is almost completely gone now.

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Congratulations on the birth of your twins! A dear friend of mine has a precious 10 month little girl Kaylynn who has a hemangioma on her face. There are so many different types of hemangiomas however, you can find alot of information on www.birthmarks.org
Kaylynn is seeing Dr. Milton Waner in NYC, he is an incredible doctor and is one of the few that believes in early treatment. He is a true miracle worker!
Best wishes!

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My sister had one of these on her legs and two of my friends have children with them on their faces.
You will notice the hemangioma getting smaller and flatter by the time your son is 2 or 3. It will be completely gone by the time your child starts kindergarten, if not sooner. They don't cause any pain or discomfort either so don't worry or stress over it. Oh, and congrats on the twins!!! I'm jealous!

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My now 3 year old daughter a minor hemangioma on her stomach at birth. The doctor told me a bit about them and said we would simply watch it. Often they grow, sometimes they don't. And when they do grow, after a few years, they shrink and then go away by the age of 10.
My daughter's never grew at all. It is just some tiny red specks that are barely noticeable.
We have a few friends whose children have had one on their face. One child had hers lasered, though they then moved away and I don't know the results. The other had it on her forehead and it never got very large. She is 3 now and cute as can be.

Congratulations on your boys!

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My daughter was born with a strawberry shaped hemagioma (sp) on her back it was puffed out when she was born her doc said it should start going away on its own, but if it got to the point where it seamed to hurt her he would re-evaluate her and possibly drain it, (its full of blood, it won’t bust). He did say it should just go away on its own; it is she is 6 now and you barely see it. It is almost all gone.

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My older daughter was born with a small hemangioma on her eyelid. We were advised by our pediatrician to see a specialist. The specialist said that it should not be removed because it was on the eyelid. He also said that it would disappear by itself in a few years. We saw the specialist every six months so that he could monitor the size. Thanks to God, it completely disappeared by the time she was three! I don't know that our experience will help you, but I don't believe that there is any reason for alarm . I believe because of it's location that it can be removed if it needs to. Good luck and God bless.

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When my daughter was born, she had a small red spot on her side. By the time she was 6 months old it had grown to the size of a quarter. My pediatrician said it was a hemangioma and would go away by the time she was one. Well, she was more like 2 1/2, but it is almost completely gone now.

1 mom found this helpful

Is it just a red birthmark-looking spot? My 22 month old daughter has a hemangioma on the inside of her left elbow. It's about the size of a ping-pong ball. When she was born it just looked like a spot of broken blood vessels that wasn't very noticeable. Within a few months, it became bright red and puffy and was dry, itchy and scaly. But now it has gone way down and faded quite a lot.

What they told me about it was that it will probably mostly go away when she is older and what is left (if any) can be removed with a laser if we want to do that. Hope this helps any at all. Congrats and good luck!

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Hi Gina,

My niece, at a few months old, had hemangeomas all over her liver, she swelled up with them so large that her skin was transparent. She finally had a liver transplant at 5 months old. The good news is, doctors at Texas Childrens are familiar with this, and are very good at what they do ~ she now 3 1/2 and has had no rejection. I have also heard of hemangeomas going away on their own as the child ages, but those are primarily external. Put it in the Lord's hands, your baby boy be just fine.

A.

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When I was 9 years old, I woke up one morning and my left shoulder hurt. I thought maybe I just slept on it wrong. By the time I got out of school that day, I couldn't lift my arm from my side. You could see a growth under the skin on the backside of my left shoulder. My mom took me to the doctor that afternoon and the next morning I had surgery at Children's Medical Center. They removed a mass slightly smaller than a baseball(the thing grew to be that size in 24 hours!) and looked like a cluster of small grapes (blood vessels). They said it was muscular hemangioma. I am 29 years old now and to this day I still have problems with that shoulder. I went to several doctors a couple of years ago and they all told me that there is still some of the hemangioma left but that to remove all of it, they'd have to remove so much healthy muscle that I could lose the use of my left arm. The tumor isn't growing so I just live with the pain. It's not constant and for that I am grateful but it is enough to disrupt my life on occasion. When it hurts, I can't pick up my son and he doesn't understand why I won't hold him. Anyway, that's my story. I did some research and, yes, most hemangiomas form in children and on or around the face (but they can pop up anywhere) and they usually do go away on their own leaving little or no scarring. I'd suggest keeping a close eye on the area and if you notice any changes or if it keeps your son from developing normally, like when it comes time to crawl and such, see what can be done to have it removed. In the meantime, enjoy your babies and congradulations!

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Hi Gina. My daughter I believe had the same thing. It is also called a strawberry birthmark. She had one on her head that I swear looked like it was going to pop. She is 5 now, and it is flat and looks like red freckles now. I know there is things you can do, but we did nothing as our doctor said, and it cleared by itself. I know it is ugly to look at, but it is very painful to remove. Well at least I know they were 12 years ago, because my niece had one on her arm. Her Mom did 2 treatments, and stopped because it hurt my niece so bad. What does the doctor say?

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Hi Gina - Congrats on your twin boys! I have 3 year old twin boys, and will tell you there is never a dull moment!

One of my boys had a hemangioma on his forehead. It was not raised, but defintely not beautiful either! We were also told that it would go away by the time he was 2 - it did not. We took him to Dr Jay Burns scar revision (from other NICU scars) and he recommended that we go ahead and laser it. He would like for us to do it one more time, but it is hardly noticeable now, so we may just leave it alone.

I'm not sure about your insurance, but we were told that most carriers pay for children to have these malformations removed while they are small - the older they get it becomes
cosmetic, so definetly check with your insurance. Our insurance did cover 100%.

L.:)

Congratulations on the twins! My niece was born with a large one on her arm. At times it seemed so huge, but as she grew it flattened out and eventually "reabsorbed". She's 5 now and there's just a darker spot on her skin where it used to be. My only concern would be where it is located. I remember the doc telling us to be careful not to scratch or abrade the area - which was easy for the back of the upper arm, but on the knee seems would be impossible to protect. When you go in for the next check up I would ask the ped to give you a few minutes and really discuss the options. If you try to remove it, it could cause scarring and tightness around the knee. If you don't remove it, will crawling and other kid tendencies be a concern. 99% of the time they are just a cosmetic concern unless they occlude vision or breathing and the body pulls them back in over time. Good luck!

Hi Gina, I have known few infants with hemangiomas that have just been left alone because theirs were an asthetic issue only. There is a good organization called www.shareasmilefoundation.org that was founded by a family in Allen whose daughter had the same diagnosis. It is a foundation that helps families treat them through donations. It also has some good information about what they are and what the options are for treatment if appropriate. Congratulations on your twins!

Hi Gina! How large is the hemangioma? We have a 7 1/2 year old, who has one. It is pretty tiny on her stomach. The ped. also called it a hemangioma. She told us that it is only harmful if it is on the eyes, but not to worry. She also said that it MAY dissapear, but may not. I personally want to have it removed, because it will show when she wears a bikini. I don't want her to be self-consious (we need spell check) about it. Our niece also has one, and she said that her doctor told her it's a birth mark, but she is 21 now, and has never had a problem with it. HOpe that helped a little.

My daughter had a hemangioma on the back of her head when she was born. It was about the size of a quarter. The doctors told me it would go away on its own, probably by age 1. It was completely gone by 9 months. It was no problem at all for us. Some doctors will suggest removal if it impairs the child in some way (such as seeing if it's over an eye, walking if it's in the way on the leg, etc). Hope this helps.

My boy had a hemangioma on his forehead at the hairline. I asked the pediatrician immediately what to do - he said it was no big deal, it would either go away, or if not insurance may cover plastic surgery. I freaked! I didn't want him to deal with that kinda mess, plus the stigma for him in school. We did the comb over thing and didn't think much about it until we noticed it shrinking . . .and then we didn't check for about a month and around 1 1/2 years it was GONE! It should go away, just make sure he takes care not to abrade it, protect it from rubbing as best as possible, and it should go away by one year.

Gina,
If we are talking about the same thing, my son had one on his head. I was told that it was blood vessels that had formed outside of the skin. Our first ped. told us it would go away by the time he was 2 years old.....and it did. It was not very pretty, especially being on his head and he had no hair. I really have to look for it to find it now.
L.

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