Hemangiomas on baby - do you have any experience?

[5LittleMonkeys]

My 16 month old has several hemangiomas. She has a one on top of her head that is about an inch in diameter. One on her back about the same size. She also has one on her leg that is flat but is starting to fade. She had a sub-dermal one under her left eye that we had to have surgically removed because it was impeding her vision.

 

I am so tired of explaining to people what "that thing on top of her head is". I want it to go away...NOW. Hubby wants to have them removed but my inclination is to wait as I know they should go away on their own...eventually.

 

If you've had a child that had one at what age did it go away. My pediatrician said between the age of 5 and 9. I'm looking for some reassurance that they may go away before that.

[Mejane]

Both of my kids had them. Daughter's is on her upper chest. She's 17, and it's still there although much lighter, smaller and flatter. Son had a very large one on his wrist, and his is completely gone (he's 14.) They did start fading early, although I don't remember the exact age.

 

Daughter's doesn't seem to bother her, but if it did I'd take her in to have it removed. Honestly, when the kids were small I thought of them as good identifying marks.

[courtney.byrum]

My daughter has one on her back. It appeared while she was still in the NICU at about 6 weeks of age and I'd say at about 4 it started to flatten and fade. If it goes away completely it will probably still be a few years at least but it has definitely changed in the last year.

 

On the other hand - my DH has one on his arm that never faded at all.

[Surlygirlie]

Well, my son has two cavernous hemangiomas (deep blue color). One thin one across the bridge of his nose and a larger one on his bicep. The pediatrician told me that they would fade over time. They haven't. The one on his bicep has actually become more prominent. He's going to be 9 this week.

 

Our new pediatrician said that unless they are impeding anything (the cavernous ones can start to restrict nerves sometimes), or my son is bothered by them then to just leave them alone.

 

I understand how you are feeling though. When he was much younger, people assumed it was an awful bruise and would ask me (or him) what had happened.

[Tap]

2 of my kids had 'stork bites' that faded but none have had a hemangioma.

 

If the birthmark is in the hair line what is the prognosis for hair in the area? Do you know if having it removed will affect the hair follicle? This would be a big guiding question for me.

[scubamama]

Aime,

My 2yo dd has a lacy hemangioma on her cheek. It's actually inside her mouth high up on her cheekbone and it looks like a purple mass. The ugliest part is inside her mouth but because it's "lacy" (not a consolidated mass) it has tons of fine blood vessels that are red and purple covering her cheek - it really looks awful. I've lost count of people who've asked about it or have told me not to slap her! It tends to be the ignorant checker at the market...I say, "She has cancer...you should mind your own business!" ONe checker was so persistent I actually asked to speak to the manager! It turns out he was just as ignorant and I felt like I was running a show on hemagiomas. She was diagnosed just after birth and due to the type and location she could have gone blind in that eye b/c this type tends to have explosive growth (would crush the eye) then gradually shrink. We're on the "shrink" pahse now....I can't wait for it to be over. My family has never given me a hard time about it - I'm a nurse and I tend to be very matter of fact and ahem, "discourage" further inquiry. We are following Dr's advice and are satisfied this is the best option.

Hang in there. People tend to quite rude and I try to remember they are coming from a lack of knowledge. If they are nice, I am too. If they're jerks and try to touch her I cut them off...I let my inner charge nurse come out! :tongue_smilie:

 

Michele

[Perry]

Ds had one on the end of his nose. It was mostly gone by age 7 or 8, completely gone by 10. His cousin had a large one on her cheek, but I don't remember when it disappeared. She's 12 now and it has been several years.

 

When friends asked, we explained that it was a tangle of blood cells, it was harmless, and it would disappear on its own. When nosy strangers asked we smiled and told them it was an angel kiss.

 

Now it's a distant memory.

[5LittleMonkeys]

Forgot to mention the one on her head and the one on her back are raised. The one on her head is about 1\4 inch tall and the one on her back is slightly taller than that. They don't seem to cause her any pain but I am constantly worried about bumping them or scraping them. The one on her head is just slightly forward and to the right of the very top of her head. We were told by one dr. that removing it "might" cause a bald spot but I think sometimes I'd rather have a bald spot than a huge bright red lump jutting up. There is no hair there now anyway.

 

I feel guilty for not being at peace with the way she is.

Edited April 12, 2010 by 5LittleMonkeys

[jfletcher8091]

#2 daughter has one over her left eyebrow. I know how you feel about strangers-- I could not believe how many people would come up to me in the grocery store and say- "What's wrong with your baby?" Can you imagine?

 

Anyhow, when she was a little baby, I worked with a guy who said his daughter had one on her neck as a baby, but it was gone by kindergarden. We seem to be following that schedule, it has flattened almost entirely and is just the faintest shade of pinky-purplish- you really have to be looking to notice it. She turned 4 in February.

[Corraleno]

My son had a very large cavernous hemangioma on his forehead, as well as several smaller, flatter ones on his leg and torso. The one on his forehead grew rapidly until it was the size of a chicken egg and about an inch high ~ on a little baby face. It was red and purple and people constantly stared at him and asked rude questions. I got soooooo tired of answering the questions ~ usually some variation of "OMG what happened to his face???" DH used to curtly reply "It's a vascular tumor" and walk away, but I always felt compelled to explain it. I ended up buying a lot of baby hats, just to avoid the whole issue.

 

I vividly remember a sweet older lady looking into the baby carriage and, as I braced myself for the inevitable question, she said "Look at that smile ~ what a beautiful baby!" I actually burst into tears and thanked her for saying something NICE about my son. I will never forget that small act of kindness.

 

We talked to a surgeon about it, and he said that although he could remove it, there would be scarring, and there was also a high risk of nerve damage, so we decided to wait and see if it would go away on it's own. It slowly started to reduce in size when he was 2, and by 10 it was almost gone. He just turned 12 and there is still a very faint bump there, but no discoloration, and no one but immediate family would even notice it. So, in the end I'm very glad we just waited, rather than risk scarring and possible nerve damage.

 

Jackie

[Tap]

Forgot to mention the one on her head and the one on her back are raised. The one on her head is about 1\4 inch tall and the one on her back is slightly taller than that. They don't seem to cause her any pain but I am constantly worried about bumping them or scraping them. The one on her head is just slightly forward and to the right of the very top of her head. We were told by one dr. that removing it "might" cause a bald spot but I think sometimes I'd rather have a bald spot than a huge bright red lump jutting up. There is no hair there now anyway.

 

I feel guilty for not being at peace with the way she is.

 

If there is a possibility of her having an avoidable bald spot, I wouldn't touch it! You may have 10 years of dealing with questions but I wouldn't trade that for her having maybe 80 years of a bald spot and then she would have the questions to deal with herself.

 

At least this way most of the questions will hopefully be fielded by you. Your attitude about it will be picked up by her. I would do my very, very best to be nonchalant about it to lower her sensitivity about it. I am sure you have many, many basic answers for people but maybe a simple "It is a birthmark. I would rather not discuss it at this moment, Thanks for your concern." For me, when I have a canned response, it is easier for me to not mentally engage the topic.

 

I hope it fades very, very fast and leaves her body with little effects.

[Guest Corolira]

Out of lurking to let you know my sister's experience.

 

My niece had a very large one just under her jaw near her ear. It was extremely large--probably almost as large as her head when she was a toddler. My sister also really got tired of answering all the questions, esp. at the grocery store. They were advised to not have it removed as it could be dangerous due to the large blood supply it had and that it would eventually go away.

 

This girl is now 24 years old and is absolutely stunningly beautiful. I can't remember when it started to go away, but she really has no memories of it and is amazed to see her baby pictures. You would never guess that she had one and there are no lasting marks at all!

 

My sister is glad that they listened to the doctor's advice. I seem to remember they had to go to a special doctor once a year and he measured it and took pictures of it.

 

I would ask my doctor's advice and then follow whatever he/she recommended.

[Jan in SC]

My son had one on the left side of his stomach. It started as a flat quarter shape when he was about 6 weeks old. By the time he was one, it was almost as large as my fist. It gradually went away by the time he was five.

[Cera]

My husband had one that, based on baby pictures, started to shrink around 2 and was gone by around 4. It was quarter sized and centered on one cheek, there is no scar or mark left from it.

[Sputterduck]

I always thought I'd have them removed if I had a baby with them. They don't always go away and on occasion they keep growing to a point where the child is disfigured. It doesn't sound like you little one has them that bad though.

[Melissa in Australia]

my younger brother had a largish one on the side of his hard. it was about 2" by 1" . it disappeared by about 3 years old. it was so handy as he is a twin, and most people used it to identify which twin was which.

[Chrystal]

My son had one on his back that grew larger and more prominent until about the age of 2. It stablized and then around age 4 started to fade and then disappeared. Now it appears as a slightly sunken spot on his back. The pediatrician kept an eye on it because it was directly over his spine, but it never did cause any problems.

[texasmama]

My youngest child had two of them, one on her head which has completely gone away and one on her lip which remains and is somewhat noticeable. If she wants to have it removed in the future due to aesthetic reasons, we will look into this. I have been told by the pediatrician that they continue to grow until the age of three and then usually begin to shrink...but the ones on lips tend to stay. That has been our experience.

[5LittleMonkeys]

Thank you all so much for your words...I feel better now. The incident that prompted my post just really set me off. What is it about grocery stores? A woman asked what was on my daughter's head and after I explained she said maybe I could put a hat on her when we go out. GGGRRRRR!

 

You are all right though...waiting is the thing to do. I just needed to hear it from someone other than the dr. and my mother.

 

When my ds4 says grace before dinner he always says, "...and let ----'s bumps go away, Amen." I should take a lesson from him and be patient.

[TengoFive]

My oldest had an enormous one, but it was mostly internal. It went from her cheek, down her chest, wrapped around her trachea and esophagus and then around her heart. We had to keep getting MRIs and CT scans for quite a while until they decided it was large enough to warrant treatment. They gave her steroids, which it responded to beautifully. She had to have 2 rounds of them, as it started to grow again. After the 2nd round, it stopped growing for good. She's 12 now and still has a light pink spot where the external part was on her cheek, but other than that no one can tell she ever had one. Her face was horribly misshapen though when she was a baby. I can't believe it when I look at pictures of her.

Surgery wasn't an option for us as hers was just too big. The blood loss would have been horrendous, so the specialists all said steroids were the best, first option for her. I don't know enough about the external hemangiomas though to know if steroids are an option for them.

[5LittleMonkeys]

Oh my goodness TengoFive, that must have been terrifying! Others have also posted about their dc having much worse hemangiomas than my dd.

 

This is what I needed to hear to put things in perspective and snap me out of my pity party.;)