Tuesday, August 11, 2009

The Appointment

Today was our appointment in NYC for the surgical consult with Dr. Waner about Andra's hemangioma. We got there right on time...and then waited nearly 2 1/2 hours. It was a tiny waiting room with lots of people all waiting for one doctor. I expected to see more kids with hemangiomas, but this doctor treats all kinds of vascular birthmarks and tumors. Only three other kids had anything noticeable on their face. Only one little girl had hemangiomas (multiple, on her back). It was interesting talking to a couple other parents, eavesdropping on some other conversations. Not a bad wait...Andra of course was a champ, chatting up the other babies despite being on somewhat of a nap strike lately.

The short version (all I have energy for) is as follows:
  • Dr. Waner doesn't believe her hemangioma will ever go away completely. Ever. And it will likely be a slow involution at any rate, meaning yes, it'll still be obvious when she's 8, 9, 10...
  • Our laser doctor probably should have referred us to a surgeon (or at least discussed the idea) once her hemangioma got so puffy, as in beyond the scope of what a laser can really do. That irks me a bit. The initial laser doctor we saw (who ended up not taking our insurance) often refers patients to Dr. Waner. We looked into surgery all on our own. Not that it changes any outcome, just that it was a pain in the ass driving into NYC that much.
  • If we elect surgery, it would be an hour-long, outpatient procedure and after 24 hours Andra would not know the difference (as in, the recovery is minimal).
  • The best time to do the surgery is now up to 18 months (June) because the tumors (and/or the babies, I was confused) have more stem cells then and that will minimize any scarring (which would be minimal anyway).
  • We have to wait about 30 days to hear from our insurance company whether or not they will pre-authorize the procedure. Even if they do, that doesn't actually mean they will end up paying. But, supposedly the hospital is in network and they would pay the hosiptal costs, just not the doctor's fee, which is $8500. So presumably $8500 would be the maximum we would have to pay, 20%of that would be the minumum. Cheaper than we'd expected, not so expensive that money will factor into our decision.
  • Our decision is likely to go ahead and do the surgery. As early as late September, they said. We could have gone ahead and scheduled it...I needed time to just process for a few days. As much as I don't want Andra teased, etc., it's part of her and I will miss it, it will be gone so suddenly.
  • We liked the doctor. He has done a lot for kids disfigured by vascular birthmarks and doesn't turn anyone away if they can't pay.
  • Andra will be the same smiley kid with or without the hemangioma.
A quote from an article that kind of reinforces our decision that it's the right thing to do:

"If you came to me with a big juicy red thing in the middle of your face and I slapped you on the back and said, 'Don't worry, come back in five years,' how would you feel?" asked Dr. Milton Waner, co-director of the Vascular Birthmarks Institute of New York, at Beth Israel, which this month was host of a meeting of physicians on treatment and research. "How can you talk to a child that way?"


Mama Simmons said...

Tough choice I'm sure. Glad you like the doctor!

The only way I can think about this is to wonder what I would have wished my parents to do if it were me as a kid. I think I would have wanted them to remove it. Kids can be quite tough on each other (as you well know I'm sure from your teaching experience) so she might have a hard time in school if it doesn't get removed. It's a shame that it's like that, but that is our world, I think.

jsmarslender said...

I know what you mean about missing it. When I was thirteen I had a tiny mole removed from my lip and I still miss it. But I was never teased about that either.

There is a girl in my hometown who was born with a port wine stain across her cheek. She's a teenager now and still has that mark. She doesn't hide it and I think that has its own beauty. But at the same time, I don't know if she came home and cried to her mom because kids were mean to her in school. I don't know if kids are still mean to her.

There's a lot of beauty in birthmarks, things that distinguish us from one another. I don't think we always see that, but you seem to recognize that this is part of Andra. But you also recognize that this could cause Andra problems in the future.

I think you'll make the best decision as Andra's parents. A few days to be sure surgery is the best route is a good idea - gain confidence in your decision before scheduling an appointment. I'm glad you feel good about the doctor (and that you found him on your own). Keep us posted.

Natalie D said...

This is tricky for sure. What a long wait, my god. I'm sure you will do what you think is best and all will work out in Andra's best interest. Good luck :)

X-Country2 said...

Sounds like you're making the right decision. Good luck with it all.

DC Running Mama said...

I was just wondering what the status of this decision was the other day. Not that it is the same, but making the decision to get our son circumcized was really hard for us. He was this perfect precious baby and I didn't want to be the person deciding to cause him any pain/fear. I think you are making the right decision. Better to have her deal with the pain now when she won't remember it than later on in her life. This being said, my sister suffered from some horrible 3rd degree burns on her arm and hip as a child and was teased a lot as a youngster. She learned to make it into a joke saying that she got it wrangling with a alligator, but I know that kids weren't necessarily nice to her. She once thought about plastic surgery, but the pain turned her off. In addition, she felt that it had become a part of who she is. I think having such a mark on the face is a totally different matter, though. You can never cover up your face. Good luck and your strong little girl will overcome this!

Debbie Martin-Consani said...

Wow. You must be torn. As you said, you could spend an hour and take away any potential hurt or spend months/years worrying it.

What ever you decide, Andra is a gorgeous and happy wee girl, with a loving family. That is all that matters.

Nitsirk said...

Thanks for the flying tips. It sounds like you are handling your decision well. It's so hard when the little one can't tell you what they think. I know it will all work out regardless of what you choose.