March for Babies

Monday, October 23, 2006

Pandora Says What?

“Think Outside the Box” is a fairly well known concept in business these days. The original intent was to challenge people to break free from the tired and structured way of doing things and come up with fresh new ideas. Around my office it is not unusual to hear the boss ask someone, “What were you thinking?” to which the reply is “I was thinking outside the box, sir.” Then we all yell, “Get Back In The Box!” We do like our structure around here, but we have fun with it too.

Thursday my mother and I took Azure in for a check up on her hemangiomas. She has a large one on her leg, which we have watched and bandaged when it ulcerated but are completely unconcerned about. She has another one on her lip. This is resulted in a referral to the plastic surgeon. If it got so big as to interfere with her ability to eat, we would need to intervene in some way (steroids, laser treatments, etc.). It never actually got that big and is now much smaller and lighter in color. He wants to see her back in a year just to double check. No big deal.

Then, things went wrong. I said, “As long as we are here, can I get your opinion on a scar she has?” He consented. I removed the clothing covering her upper arm and the large starburst scar thereon. The scar is left over from a sore she developed her first week in the NICU. They had an electrode cuff on both of her upper arms. Because her skin was so sensitive, she developed this sore. They moved the lead to a different place and we treated the sore with antibiotic ointment several times a day, but before the sore was completely healed, it was once again covered by an electrode. It never did heal properly and left a sizeable scar. I expected him to say something to the effect of: it was a large scar but as she gets bigger it will get smaller and she will probably end up with a bit of puckered skin there or maybe a slight discoloration but in the end, no big deal. I imagined her coming to me as a teenager complaining about this mark on her arm and me sitting her down and explaining that scar was a badge of honor. She fought for her own life and she won! That scar is the reason behind the placement of my latest tattoo, the one of her tiny foot directly off the birth certificate. I had it put on my arm in the exact place she has that scar. (It comes across as a little redneck until people hear why I put it there.) That scar is a part of who she is and what she has been through!

The doctor however, did not say what I expected him to say. He said that the scar would grow as she grows and spread out and that the tissue had separated from the fat below and would never correct itself. He said he could feel right down to the bone and tendons and that this was dangerous. He said the older she gets the tighter the skin will get and she will end up with this giant indentation in her arm. He said that she needs reconstructive surgery to repair it, sooner rather than later.


Now, his idea of “sooner” is in about 5 months. That is how long it will take us to get approval from the insurance company (very likely as it is a result of the NICU) and get her placed on his surgical schedule (he is booked that far out). Her age does not really bother me since by the time we get this done she will be a year old (1yr actual/8 months adjusted). What bothers me is that we thought she was going to have to have heart surgery and it scared the Hell out of us. It is a life-threatening situation when you need heart surgery. They don’t just do it for kicks. Her arm is not life threatening. I never would have requested the scar be fixed for cosmetic reasons. If that were the case I would let her make up her own mind when she got old enough to understand what she would need to go through in order to fix it. What he is saying is that it is medically necessary. Not cosmetic, but important to her health to protect those bones and tendons that are exposed at this point.

I am left feeling torn. If she really does need it, of course I have no problem with her having the surgery. However, this particular doctor is a plastic surgeon. It is his business to fix things that do not look right on people. I want to sit him down and tell him that we went through infertility and that she was an IUI baby and then she was born 3-1/2 months early and we went through the Hell of the NICU and now she is home and relatively healthy and this mark on her arm is pretty much the least of our concerns. I want him to completely understand our perspective. Is it really medically necessary or are those buzzwords to get insurance to pay for cosmetic improvements?

At the same time I am horrified at my own obliviousness. What if I hadn’t asked about the scar? What if I had let it go only to find out in a year or two that her arm was growing abnormally due to the tightening of that tissue or an injury to one of those tendons? I thought it was just a scar!!!!! I thought if anything I might have to rub one of those new scar treatment ointments on it or something. Surgery!

So, I asked what I thought was an innocent question, let Pandora out of the box, and now I am SCREAMING in my own head, Get Back In The Box!


Suz said...

I felt the same way about the shape of the twins' heads. I ask an innocent question and the next thing I know, we're down getting x-rays. The point is that you did ask the question; you didn't let it slide and Azure will get the treatment she needs, if she in fact really needs it.

Cat, Galloping said...

don't get back in the box, get a second opinion, preferably from someone who is *not* a plastic surgeon. then you can feel good about your decision. unless, you know, the second opinion disagrees and then you need a third opinion to break the tie.

Miss W said...

Oh, Blue! That's how we ended up with the surgery to remove the spot on the lowercase's head. Get another opinion for sure. But to be honest, our surgeon was a pediatric plastic surgeon as well and I don't think he was rushing in to surgery at all.

Sol said...

Oh, Blue! Get a second and third opinion before doing anything or freaking out too much. I am glad you caught this ealy on and have some time to make the right decision.

Flicka said...

How could you be expected to know every medical thing about scars? You're not a doctor, it's not your job to know. You did the right thing by asking for it to be checked out. Don't beat yourself up.

I echo the other ladies...if you think this doc is just looking to cut because it's his specialty then get another opinion (or five.)

Tiffany said...

I think it is time to ask her regular doctor and maybe another plastic surgeon - especially after you tell the next plastic surgeon what you have told us. Good luck

Anonymous said...

De-lurking to say that you asked because of intuition (I don't think we give ourselves enough credit for that). Also, since it appears the plastic surgeon feels it will impact her bones and tendons, I would encourage you to try and get in to see a pediatric orthopedic surgeon. Then you might feel more comfortable with there assessment since those docs deal solely with orthopedic issues. Good luck, and remember to give yourself credit for asking--something made you do it. Sarah