Monday, October 26, 2009

Dragging my feet

If you're tired of reading about our medical dramas, feel free to skip this post.  I won't be offended.  (Sometimes I get tired of reading about my medical dramas!) 

I'm living in denial.  Everything around here has been going so smoothly.  Max is doing brilliantly- he started climbing stairs, walking and signing all in one weekend.  He's smart, adorable, and learning new things every day.  Besides my bout with the swine flu, we've been remarkably free of hospitals and doctor visits.  And that's part of the problem. 

Ever since the swelling started going down from Max's initial surgery, I've been questioning the results.  We sought a lot of opinions, and after talking with a bunch of doctors and each other, we decided that the very soonest we would pursue another surgery would be after the first of 2010, giving Max enough time to heal from the first surgery, and us plenty of time to research and make a good decision.   If we decide to stay in Utah for surgery, we've decided on the surgeon we'll use.  We met with him in July, and agreed to arrange a follow up appointment in September to determine for sure if surgery would be necessary. Yeah, good thing its the end of October.

I am so conflicted.  I really, really don't want to put Max through another surgery.  The surgery and the week in the PICU that followed was one of the hardest things we have ever been through as a family.  Its difficult for me to even write about it, because of all the emotions that surrounded that time.  One of the only things that got me though the whole process was that it was supposed to be a one-time procedure.  Thinking about doing it all again fills me with equal parts anger, dread and sadness. 

A second surgery is even more risky than the first.  We eliminated one surgeon here in Utah because despite all his craniofacial experience, he had never done a secondary reconstruction, and I'm not about to let him practice on my son.  It once again involves shaving his head, five-six hours in surgery, and almost a week in the hospital for recovery.  Because of our history previously with SAIDH, we're at higher risk of repeating those complications.  Yes, Max recovered quickly, and was acting completely normal within two weeks, but with a surgery like this, there's never a guarantee that everything will turn out as well the second time around.

The conflict comes because as far as we know at this point, a second surgery would be considered purely cosmetic, meaning it would be only to improve his appearance.  While craniosynostosis carries with it some risk of intercranial hypertension and other problems, the original surgery freed his fused metopic suture, and as far as we know, this surgery isn't medically necessary for his health/brain function/eyesight etc.  So on the one hand, the surgery has been recommended by everyone we've talked to to improve his appearance.  On the other hand, we're talking about putting our baby boy through another long, painful, and potentially risky surgery.

And that's the hard part, because my husband and I have completely different opinions about what we should do.  I think we should do the surgery.  While there are risks with every surgery, craniofacial surgeries are pretty darn safe.  This correction would give him the best chance of having a "normal" facial appearance.  I feel terrible for saying things like that.  I think Max is absolutely adorable, and would, of course, love him no matter what.  But people are cruel, and its hard enough to grow up when you look perfectly "normal."  The goal with another surgery would be to broaden and flatten his forehead, advance his browline, and increase the space between his eyes.  We have a limited window if we're going to do the surgery- its definitely something we would need to do sooner rather than later.  There's a number of reasons for that- the younger he is, the less likely it is he'll remember it, the more pliable the bone is, and the better the correction holds.   As I've been obsessing over his head shape for the months since his surgery, I've noticed the triangular shape becoming more and more pronounced once again, and there's really no way of knowing how bad its going to get.  And although I really don't want to put Max through another surgery, I also don't want him to feel self-conconcious about the way he looks his whole life and be angry or resentful of us because we didn't do something about it when we had the chance.

Tom's view is the opposite.  He thinks we should leave well enough alone.  He thinks Max is perfect the way he is and doesn't want to risk another surgery.   He doesn't want to put him through the pain and drama of another surgery when there is more risk to Max and when there's no guarantee that he'll look better than he does now.  His reasoning is that we wouldn't put our girls through an expensive or risky cosmetic procedure just to improve their appearance, and we shouldn't do it in this case either.  When I brought up the concerns I have about his appearance, Tom argues that there are a lot more important things than appearance, and that Max's charm and personality will will people over and he won't even need to worry about having a perfectly shaped head.

I don't even know how we're supposed to make this decision, especially when we're on such opposite ends of the spectrum.  So we're going to set up another meeting with the surgeon here, and a phone consultation with the doc in Texas.  We're going to arm ourselves with a big list of questions, find out pros and cons, define "medically necessary," then we're going to do some major fasting and praying.   And I'm going to stop dragging my feet and make some phone calls starting this week.

I wish there was some other way to do this besides going straight through it...


  1. I hope you are both able to easily come to a decision, whatever it is. Good luck!

  2. I hope that your next visit helps you to get some clarity. It's a tough call and I know you guys will make the best decision.


  3. I'm so sorry, Stacy! I never got back with you a couple of weeks ago. I'll try to give you a call this week!

  4. Stacy- it is such a difficult decision to make! I know that it's not the same thing, or as serious, but when Barrett had to get his helmet to correct his head shape, we went through some similar issues. True enough: Barrett's flat-backed, wedge-shaped, Siamese-Cat-Looking head would have functioned the same way a "traditional" or "normal" shaped head would have; and it didn't really present much in the way of medical problems, but it does make a difference in other ways. For instance, if he decided that he wanted to play baseball, or football, or anything that required the wearing of a helmet, it would be VERY hard to find one to fit such a head shape. So, to us, it became a matter of possible future safety, in addition to wanting to give him the most "traditional" and "normal" head shape we could. And also, braces on your teeth do nothing for the basic function of your teeth, but they sure do improve your appearance, and your general feeling of self-esteem. It is really quite cosmetic, yet very well-accepted, and no one even questions that. Why is correcting, improving, or changing your head shape or appearance any different? Anyway, it is such a hard decision to make, and it seemed like everyone, including total strangers, had an opinion on what we should do. Good luck, and we'll keep you in our prayers! Love, Dani


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