Some info in case your child has a hemangioma

Hi -

Just thought I'd pass along the stuff I learned from dealing with my daughters hemangiomas over the last few months. So many pediatricians give the WRONG information regarding these, including our first pediatrician.

A hemangioma is a non cancerous tumor/birthmark. The common name is a strawberry because some of them are bright red and develop a spongy texture, like the fruit.

1 in 10 children get them - fair skinned girls are 5 times more likely to get them. Doctors have no idea why.

40,000 children a year have to seek medical attention for their hemangiomas. . . and the best facility in the world is RIGHT HERE in NYC! The Vascular Birthmark Foundation in Manhattan.

My daughter developed a small, superficial hemangioma on her forehead at 3 weeks. Our pediatrician said "it's a strawberry, it goes away on its own - dont do anything."

We didnt listen. I'm not a 'wait and see' kind of person.

Hemangiomas, particularly ones on the face and neck, grow rapidly in the first year and then begin to go away - often taking 5-9 years. We opted for laser treatment every 3 weeks, starting when she was 6 weeks old.

The laser stops the growth almost immediately and takes the red out. Some children only need one laser treatment - some need more. Ainsley had 5 treatments and were so pleased with the results that we took a break from treatments. My family can't believe the difference.

Now Ainsley is 14 months old and you would never know it was there to begin with.

Having laser treatments done as early as possible is actually much better for the child, because the skin is so thin, the laser reaches the hemangioma with much stronger results. While I was nervous about having my 6 week old daughter's face lasered, it was nothing - seriously, it was nothing. My daughter cried more getting her shots than her 2 second laser treatment.

There is a limited window of time for lasering a hemangioma. Once it raises off the skin a laser wont do much good. It will take the redness out, but it will not help it go down.

Ainsley has another hemangioma on her side - she was born with a cavernous hemangioma that has a superficial component (the bright red part) and a deeper component growing under the skin (looks like a bruise and formed a lump when she was around 9 weeks old). We have opted not to do anything other than watch it because it's not affecting any organs and isnt giving her any pain.

But if you wanted it treated, doctors can:

prescribe oral steroids
inject steroids into hemangioma to stop the growth and jumpstart the shrinking stage
remove it surgically.

Some doctors will say that surgery shouldnt be done unless it's a worst case scenario - that's completely WRONG. The leading pediatric surgeon for hemangiomas, Dr. Waner (right here in NYC!!!!) operates on them all the time, with amazing results.

Ainsley got a third hemangioma on her neck at 3 months old - we had it lasered and it went away completely with one treatment.

I remember being so overwhelmed when I was first learning about this, and my first pediatrician was zero help.

I just wanted to pass along this info in case there's a mom in the future who, like me, is freaking out and wants to learn more.

I'd also recommend www.birthmark.org for info regarding hemangiomas, port wine stains, Phaces, Sturge Webber Syndrone, etc.

I just wanted to get this info out in case anyone in the future needs some answers.

Message edited 6/26/2008 2:32:18 PM.

Re: Some info in case your child has a hemangioma

Excellent post! Maddie has one on her abdomen that is measured when she goes to the pediatrician.

I wanted to add that not all hemangiomas are completely harmless. It's rare but it does happen where the hemangioma starts affecting an organ.

This is, obviously, the rare & extreme case of a hemangioma but the moral of the story is always trust your gut:
NY magazine's article

Message edited 9/17/2007 6:49:08 AM.

Re: Some info in case your child has a hemangioma

Message edited 9/17/2007 8:41:04 AM.

Re: Some info in case your child has a hemangioma

Great info to pass along.
Taylor has 2, one on her belly and one on the top of her head.
At first, the ped said not to worry abut it, but when I asked again at her 2nd appt, he measured the one of top of her head and referred us to a ped. dermatologist....after nearly scaring DH and I to death.
We went to Dr Hayman and he was absolutely wonderful. In our case, he felt it was nothing to worry about, we saw him two times, after her last appt, he felt she didn't need a follow up b/c it hasn't grown and the looks ok.
He said if the appearance bother us, we could have it lasered. Her hair is growing over it nicely, so we are going to leave it.
They can be very scary though

Re: Some info in case your child has a hemangioma

Very helpful information. I am so glad you are getting good results.

My son has a port wine stain and we are starting laser treatments next month. We are going to the Laser and Skin Surgery of NY. They specialize in Pediatric care. http://www.laserskinsurgery.com/aboutus/doctors.html

Message edited 9/17/2007 9:57:33 AM.

Re: Some info in case your child has a hemangioma

Message edited 9/17/2007 10:26:22 AM.

Re: Some info in case your child has a hemangioma

DS had one that appeared at about 3 months. Our ped wasnt too concerned, it was on his forearm and not very big. MIL made it seem like he had a tumor.

Fortunately for us, it disappeared on its own. There is just a tiny tiny little red mark.

Thanks for the info, I will keep it handy in case it happens again

Re: Some info in case your child has a hemangioma

DD has one right on the top of her head. She has had it since she was born but it has gotten bigger and raised. The ped sent us to a pediatric derm. who measured it and told us it can be lasered but wanted to wait. She said that it will get bigger before it gets smaller and it should go away by the time she is 9 years old. I was not satisfied by that answer and didn't really care for the doctor. DD has a follow up with her next week so the ped said to go and see what she says and then I can always get a second opinion..which I will. It doesn't seem to bother her at all.

Re: Some info in case your child has a hemangioma

Thanks for the post :) I just happened to pop in here today and saw this and wanted to post too!

I just wanted to say that my little Jillian just had surgery last week with Dr. Waner - she had one pretty big on the side of her head (I forget the term, but it also had blood vessels collecting underneath, which made it more pronounced). And she is 10 1/2 mos - we pretty much had to wait until it stopped growing when she was about 8 mos before anyone would do anything -but it worked out fine since you always have to wait a bit to get appts in, etc.. we also got the 'wait and see' diagnosis at first, but at 6mos I was unhappy with that and Diedre here has been a great supporter of helping me find other options. Plus its on her face, which was another reason we wanted to be more aggressive.

I will post pictures when I get the chance - but she still has her stitches in and hopefully gets them out on Thursday - but Dr Waner/Levitin did a fantastic job. We are hopeful that once the stitches heal, you may not even be able to notice. But some babies need more than one surgery based on the size/location I think. But overall its been a very good experience with them so far!
FM me if anyone wants any other info :)

Re: Some info in case your child has a hemangioma

Re: Some info in case your child has a hemangioma

Sydney has one too, on her chest. Our peds also told us not to worry about it and I ask about it again at every visit.