Well, since our visit to the dermatologist yesterday I have been in a bit of a dilemma trying to decide what we should do about it. Let me explain: For those of you who don't know, Sophie has a congenital nevus, which is just a mole that she was born with. I'm sure you've noticed it on her right hand, it's quite large and easy to see. Anyway, there is a lot of controversy about what the risk is exactly; but these moles run a higher risk of melanoma (skin cancer) than acquired moles (moles your get after you are born) I have been told the life time risk is as low as 1% or as high as 10% that she will develop melanoma in her mole. Now there are varying types and stages of melanoma, some of which can be handled easily, others are much more serious where as some are basically a death sentence.
So with that in mind, it is up to us as her parents to decide whether we should have it surgically removed or not. I kind of wish that the doctors would just tell us what to do, but it is controversial and none of the doctors I have talked to recommended one way or the other. The dermatologist said that if we do want to get it removed that now would be the time to do it since babies scar much better before a year of age. Plus if you do it when they're young enough they don't remember it and don't have a mortal fear of doctors the rest of their lives. There are risks and benefits either way, of course. So if we leave it we just run the risk (whatever that may be, no one will give me a straight answer) of her developing melanoma. But there are other side effects of having a large noticeable mole on your hand that you can't really cover up... like being made fun of at school, being self conscious, having it catch on clothing, and things like that. Where as if we have it removed, she will be left with a scar, probably a pretty gnarly one too. Since the area is too large to just cut it out and sew her up (it would pull back her wrist and she would lose mobility) we have 3 options for removal:
1. Serial Excision - which is removing the mole in 2 or more stages several months to a year apart so the skin has time to stretch in between
2. Skin Graft - which is when they would take skin from somewhere else on her body (probably her groin) and use that to fill in the hole the mole left on her hand
3. Expansion - which is where they would insert a balloon under her skin next to the mole and slowly fill it with saline saline solution to sort of "grow" more skin to later use for the where the mole used to be
All of these have risks, benefits and disadvantages as well! Serial excision and expansion would both require at least 2 surgeries, where as skin graft would be just one surgery but a longer recovery and two scars instead of one. Serial excision would leave the worst scar since there is so much tension involved and scar tissue is weaker than the skin around it and it would be the part to widen. Skin graft would have a circular scar instead of a line and could end up looking really good but sometimes the skin doesn't take well and ends up bumpy and usually they don't have feeling in the area of the graft so she would have to be extra careful, also the grafted in skin will be slightly different in color than the surrounding skin and may end up looking sort of like a patch. Expansion would cosmetically probably yield to best results as it would have matching skin, only one scar in a thin line but it is the most risky of any of the surgeries. There is risk just due to having a foreign object in her body that could burst and will put a lot of pressure on ligaments and things her arm that could cause permanent damage.
Of the 4 plastic surgeons I have consulted with 2 recommended serial excision and 2 recommended a skin graft. The ones I have asked about expansion have discouraged me mostly because of the great amount of hassle involved whether that is on my part, Sophie's or theirs it was unclear. Have you ever tried to talk to a surgeon? All that I have talked to were the most awkward unhelpful people I've ever met! When I ask them questions they mostly answered, "it's up to you..." or "it depends" and act like they just want to get out of there so I will stop asking them questions!
So, Sophie has an appointment with yet another plastic surgeon (this time in Denver) on November 6th. We'll see what he thinks. The only problem is that I will have to hurry and decide ASAP afterwards because he could to surgery two days later on the 8th or not until after Sophie's a year old! Now would be a good time to do it for the reasons mentioned before plus Sophie's on medicaid now and we wouldn't have to pay anything to have it done. But the dermatologist (I really liked her) also gave me the name of a plastic surgeon in Chicago that is like the best in the country and his thing is expansion. So we could wait like 4 or 5 years so Dan has a job (hopefully) and we could fly out to Chicago and have this other guy do it.
Sorry this is so long... but for those of you who made it through the whole thing I would like to hear your opinion about what you would do for your child or what you would want if you were Sophie. I fear she'll either hate her mole or her scar in the future and that she'll wish I didn't make this decision for her since she's the one who has to live with it.
After all of that mole talk; here's a fun video of Sophie playing with her Dad on our bed, she laughs pretty hard.
6 comments:
I'm so sorry you guys have to make this decision. First of all you should really pray about it. But if I were in your shoes I would probably do the skin graft. Having an ugly mole is more scary looking than a scar. Sophie might be cranky for a few days/weeks but it's easier and probably cheaper than 2 surgeries. Since they will probably do the graft from her groin no one will probably see it anyways. Whatever you choose though we will support you!
well i already sent you an email on the skin graft thing, or whichever way you choose and i was very happy to be able to show of that way cute video to matt finally sophie and her daddy are addorable
Didn't you go thru all this and decide before you left? That's terrible having to decide again. Have the facts changed? Or are you just feeling differently? I'm guessing that if things don't look as good as you want with a first choice, you could do the other things later, if needed.
Wow... I don't know cause I really am not old enough to know about these things but the dan with sophie was funny adn cute (to look on the bright side) and she just get's cuter every day i see her and hope that if you keep the mole off or on than she will still be the way that is always smiling :)
I think you should make a decision and take it to the temple.
We just read your post because we were in Virginia for Matt's White Coat ceremony. We know two things, you two are the most capable, intelligent and loving parents we know. The decision is hard because you are playing "what if" in your mind instead of "This is the best decision dealing with a hard situation so lets go ahead." We think waiting a few years is not a good idea because that Chicago specialist may not even be practicing at that point and it will probably not be that much better. So we think it should be done when Sophie is really young so she won't remember it. Basically it sounds like the decision is really between the skin graft and the expansion, with the expansion having more involvement now but less scarring later. We would lean toward the expansion because we have seen it used before on areas much larger than the size of the mole like with the conjoined twins. But we know you will choose wisely and with much prayer.
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