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Wednesday, October 7, 2009

Of Vanity and Vascular Birthmarks

In case you haven't noticed by now, I am going to have to graciously back out of BlogapaLOSEa. Unfortunately, life has dealt me more than I can handle right now, what with my firstborn starting daycare, with returning to work insanity, and with Hannah's ever growing list of relatively benign medical issues. A little constipation here...a dash of reflux there...some heat rash....but the object of my prevailing obsession has to be Hannah's hemangioma located between her eye and her nose. Hannah's Hemangioma will have to be the title of my first childrens book. Let me introduce you:

4 days old:

20 days old:

6 weeks:

2 months old:

This little benign tumor known as a vascular birthmark, specifically a strawberry hemangioma, popped up about two weeks. We just thought it was a stork bite, but it has been growing...and growing...and growing.

Well, I'm southern.

And vain.

And I want this sucker OFF my kid's face.

If I am honest, it was my vanity that drove me to our pediatrician's office with my bristles up and my claws out at Hannah's four week appointment. You see, the usual course of action for these little boogers is the "wait and see" approach. Although they can get as big as a softball, 50% of these hemangiomas will be gone by the time the child is 5. In 70% of cases they are gone by the time the child is 10.

Pardon? My kid could have a bloody looking softball on her face until she's 10? Maybe longer?

So imagine my surprise when my pediatrician brought it up before I even had a chance and sent us straight to the pediatric plastic surgeon. Ok, not STRAIGHT to the pediatric plastic surgeon. We had to wait an agonizing month. A month of praying. A month of watching this thing get darker and puffier. A month of obsessing on the internet. A month of crying. A month of people asking about it. A month of me saying, "It's not a scratch. It's a hemangioma."'s appointment came with Dr. Claire Sanger at the University of Kentucky. Dr. Sanger has written articles about the evaluation and treatment of hemangiomas and as far as I can tell is a leader in the field in this region. Since, I was dying of anticipation of what this visit would be like, here's pretty much how it went for anyone else in the same boat:

1. We had to register with the University Hospital and fill out a medical history form (not much medical "history" for a 9 week old)

2. They took us back and a medical student gave her a thorough exam looking for any signs of other hemangiomas on the rest of her body.

3. She then measured the length of the hemangioma, about 1 cm and asked us lots of questions about my gestation, her birth, when the hemangioma appeared, and how rapidly it has been growing. She also took a million pictures of my baby's face, which made me unexpectedly uncomfortable.

4. Then Dr. Sanger came in and explained what a hemangioma is exactly and what the different "camps" of thought are on their treatment (i.e. surgery, lasers, steroids, wait and see, etc.)

In her opinion, and I agree with her in our daughter's case, with the "wait and see" approach there is no way of knowing if she will fall into the 70% that are gone by the time the child is 10 years old. There is also no way of knowing wether it will turn out to be a minor hemangioma or something really serious. Furthermore, there is still a risk of it leaving a scar if left to heal on it's own.
She then went on to say that with surgical excision she will 100% for sure have a scar. So her preference is pulsed dye laser. There is a minimal chance of scarring, and they can also use a minimal amount of anesthesia. Because my daughter's hemangioma is so close to both her eye and her nose, Dr. Sanger feels it is absolutely medically necessary to treat it. While it might never get big enough to impede her vision or her breathing, there is also a possibility that it will.

Soooooooo, we are going with pulsed dye laser treatments. They will give her a little gas anethesia for about 10 seconds, do about 30 pulses with the laser, and then HOPEFULLY she will be able to go home. Because she was born 5 weeks prematurely, Dr. Sanger said there is a possibility that she might have to stay overnight, but we are really pushing for this to be outpatient. Her apgar was 9 9 when she was born and she didn't have to spend even one second in the NICU. She was just ready to be born! But we will certainly do whatever they recommend.

Her laser treatments will start in late November (waiting for that 3 month mark for anesthesia) and will be administered every six weeks until the hemangioma is gone. Dr. Sanger said it could take anywhere from 1 treatment to 10. We just don't know how her hemangioma will respond. After the first treatment her hemangioma will turn bright purple like she has been socked in the face and this will last for about a week. Then the hemangioma should start to involute, which means GO AWAY.
In the meantime, they are going to send a letter off to the insurance company explaining that it is a medically necessary procedure and Dr. Sanger is confident that the insurance will cover it. We'll know for sure at her next appointment where they will give her a physical on November 4th.

Of course, as her mother who has been obsessing and reading and researching for 7 weeks now, somehow I was totally tongue tied when I finally got a doctor in front of me who is going to treat it. I have so many questions now that I have LEFT the doctor's office:

How long does "30 pulses" take? 30 seconds? 30 minutes? Three hours? What specific type of hemangioma does my daughter have? superficial? mixed? I have heard these terms, but she didn't call it anything specific. How long will the anesthesia last? Will this be done at her office or will she have to go to the peds unit of the hospital? What are the possible side effects of the anesthesia? Will she be in pain after the laser treatments?

I'm sure I'll think of a million more. For now, I am thrilled that we are going to treat this thing, if not slightly disappointed that we can't treat it sooner than late November. Was hoping those first holiday pics might be Hemangioma-Free! But I definitely want my daughter to be safe.

As I am sure is the case with any medical issue a parent faces with his or her child, my emotions are running the gamut, from fear for her eyesight and breathing, to anger that my baby isn't "perfect", to guilt for feeling the latter emotion, to overwhelming protectiveness from the comments and the constant questions from total strangers.

No one has really been rude yet, but I am already doing that thing where I over-explain it to everyone before they even ask, and then they look at me like I am a crazy person. That said, I have been surprised by how many people say things like, "Oh, I had one of those when I was a baby. They go away," or, "Oh my niece had one of those. She's two now and you can't even tell it was there." Just now, in fact, my assistant informed me that he had one in the exact spot that Hannah does. They surgically removed his and you totally can't tell it was ever there and no signs of a scar.

So now I have to wait an agonizing month and half before her first treatment. How much bigger will it get between now and then? How many more questions and comments will I have to address? Will I be able to get over my own vanity and take more pictures of my first and possibly only baby girl? This little mark is part of her story. It's how she was made. I'll never get these first months back, and I would like to spend them staring into my daughter's beautiful eyes and not at this stupid thing on her face.

Give me the wisdom.

Update 7/6/2012 - This is probably the worst that her hemangioma ever got:

Hemangioma at 1 year old.

This is Hannah Jane today:

Hemangioma at 2 1/2 years old.
I really think if you didn't know that she had a hemangioma that you wouldn't even see it now.  I am confident it will be completely gone by the time she is 5.  In hindsight, I wish that we had just done the steroids, and foregone the laser treatments.  That is what her hematologist advised us, but the plastic surgeon really pushed for laser treatments.  They were ineffective and were more for our own peace of mind than what was probably best for our child.  Oh well.  It is behind us now.  We did the best we could with the information we had available at the time.