Will surgery cover her Hemangioma?

BriellesMum · #1 09-04-2008, 03:58 PM

Hello:

We are new to this site and would love some input/advice. We have a beautiful and healthy, 11 week old baby girl, Brielle, who has a hemangioma on her forehead. When she was born we noticed a 'red spot' that looked like a bruise, but it has now grown to the size of almost a nickel and has become darker, as well as thicker. The Doctors have told us they believe it's a Strawberry Hemangioma, but will not do anything to treat it. They believe in the 'wait and see' approach.

Although, she is healthy and we love her no matter what, we fear that the hemangioma will affect her as she gets older. Already little kids point at it and say "Ewe, what's that?". It's the first thing people notice when they see her.

We've scheduled an appointment with a Pediatric Plastic Surgeon but don't know what to expect. I have a PPO insurance, so I don't need a referral, but I worry the insurance company won't cover the removal (laser or surgery) since it may be considered "cosmetic".

What are the odds the insurance company will cover the treatment?

More importantly, are there any other parents out there that had hemangiomas similar to Brielle's? And if so, what treatment did they opt for? For those who were told "wait and see" how long before it disappears? Do all hemangiomas become ulcerated?

Thank you in advance for any advice.

lpm · #2 09-05-2008, 02:35 AM

I know that the first instinct is to get rid of the hemangioma, but I know several kids that had hemangiomas very similar to the one your child has. Two of them - probably half-dollar size hemangiomas - did nothing, and the hemangiomas faded to virtually nothing. The other had a dime sized one, and had laser at 3 years old (which faded it to virtually nothing).

I personally would watch it, and track the growth. Unless it starts getting really large, I (personally, again) would wait to see what it looked like at age 2 or 3. However, if you can find a competent doctor to do laser now, that is also an option. I don't think many doctors would recommend surgery yet.

Not many hemangiomas become ulcerated. My kid's larger hemangioma did ulcerate, but healed quickly on its own. (My kiddo took oral steroids, had a steroid injection, and has had two plastic surgeries, but her case doesn't apply to this discussion - and even similar looking hemangiomas may involute very differently.) Good luck with whatever you decide to do.

BriellesMum · #3 09-05-2008, 02:06 PM

Thanks for the post lpm. I noticed you're from Philadelphia - I work in Radnor and we live in Wilmington, DE. We have an appt with Dr Honig at CHOP on Oct 22nd and an appt this Monday with a Plastic Surgeon that specializes in hemangiomas in Baltimore. Just trying to get as many opinions as possible. What Dr did you see at CHOP? Sounds like they weren't too helpful, or rather, they prefer a more conservative approach.

The literature/research you find online can be overwhelming and contradicting. Some say to try and be as aggressive as possible at an early age...others say 'wait and see'. I'm not necessarily 'for' surgery, I just want to do 'the right thing' by Brielle and if possible avoid any emotional/psychological hardships and teasing. Ultimately it is up to us, the parents, to make her feel secure and confident. If we make a big deal of it, she will make a big deal out of it. That said, I still would prefer to avoid it all.

I do worry because it appears to be growing and it is getting thicker.

Having this website and reading everyone's experiences has been so helpful and reassuring. In my opinion, education is the tool!

Thank you all for your feedback and support!

bsmom · #4 09-05-2008, 04:27 PM

Hi- I'm from the Baltimore area, if you don't mind answering, which plastic surgeon are you going to go to? Our son is almost 4 months with a deep hemangioma and our doctors are using the wait and see approach. It is just hard to watch it grow...

BriellesMum · #5 09-05-2008, 05:55 PM

Hi bsmom:

We are seeing Dr Craig Vander Kolk in Baltimore. He was referred to us by a physician friend. He has experience with Hemangiomas.

We see him Monday afternoon. I will let you know what I think of him and how the appt goes. My understanding is that he prefers using laser. He is also a professor at Hopkins.

bsmom · #6 09-05-2008, 06:52 PM

That is who we went to see! He was very nice, we were pleased with our visit. We have a follow up in October. When we first went, we thought he had a dermoid cyst (as diagnosed by our ped), but Dr. Vanderkolk made the diagnosis of a deep hemangioma.We have to go for an MRI in the meantime to rule out other problems, since our son's is deep and by his eye. Good luck with your visit

lpm · #7 09-06-2008, 02:03 AM

We live in Radnor. We first saw a plastic surgeon at St. Christopher's when she was 6 weeks old, then a dermatologist at Jefferson at 2 months (who prescribed oral steroids), then went to CHOP a few days later. We saw a young plastic surgeon - think her name is Davinder Singh - and she also recommended oral steroids. We put her on steroids and continued to see the doctor at Jefferson.

We later saw Dr. Low at CHOP just after she got a steroid injection at CHLA. Dr. Low was against surgery at a young age - he wanted to wait until age 4 - but we went ahead and she had her first plastic surgery (by Dr. Reinisch in CA) at 11 months. She had a second surgery at 2 years, 4 months. She is now 4 and still needs some laser.

Insurance did cover her surgeries, and Dr. Reinisch was in-network. If you would like, I can email photos, though her larger hemangioma was on the cheek, just below the eye, not on the forehead.

Though she is aware of the birthmark, at this point it is "fixed enough" that she doesn't seem to care, nor do her classmates. Sometimes friends of my older two (ages 11 and 13) ask questions, but I never heard any rude remarks from their friends.

kandbsmom · #8 09-08-2008, 01:30 AM

My daughter had one similar to that size and we had it surgically removed when she was 4 1/2 months old. She will be a year old tomorrow, and you would never know it was there. If you search the forum under "kayleigh", my post with pictures should come up. We truly believe we made the best decision for her by having it removed by a plastic surgeon.

jgoodman0814 · #9 09-08-2008, 01:26 PM

I noticed in your first post that you were worried that insurance wouldnt cover it because its considered cosmetic. From what I was told when we had our daughters removed, is that if they are born with it or its "conginital," that they should and probably will cover it. The dr can also write it up in a way that the insurance has to cover it. You should also be able to call the help line at the insurance company just to make sure. Dont take no for an answer, appeal as many times as you have to. Here is my daughters photos and story. www.caringbridge.org/visit/avaball

mmarrari · #10 09-08-2008, 02:50 PM

Hi there,
By definition a cosmetic procedure involves a normal structure, that you are trying to change the appearance of. A hemangioma is by no means a normal structure so procedures are considered recostructive. There are formal definitions for this (better than the informal ones i just gave) and you can use these in your request for coverage. My daughter underwent many procedures, including laser and surgery, and all were covered by insurance. Basia, the appeals expert from this site probably has more accurate info for you...

I also wanted to suggest you send an email with a picture to Dr. Levitin (from the "Ask the Expert" section on the homepage here) and he will probably give you his (very experienced) opinion on what treatment, if any, would be approrpiate for your baby. He's such a valuable resource here, I would definitely want his opinion too...
Good luck!!
Marina