Wednesday, July 29, 2009

Second (and third) opinions

I didn't ever intend for this to be a blog about craniosynostosis. But I also thought, when Max was first diagnosed, that we would have the operation, then we would be done. Sure, it would be difficult. But we consoled ourselves thinking that by the time Max celebrated his first birthday by mashing cake all over his face, craniosynostosis would be a distant memory. As is the case with many other things in my life, nothing ever goes quite the way I plan it to.

Today we met with another craniofacial surgeon to get an opinion about how Max is progressing after surgery. Despite hearing that we needed a repeat surgery from a specialist in Texas, we were both hoping to hear something different today.

The surgeon we saw today was very knowledgeable and very thorough. He actually trained our first surgeon, and told us that he has done around 1500 cranio repairs. His opinion was that Max's head wasn't corrected enough. He couldn't tell us for sure if his bones were shifting post-op, or if the swelling was just subsiding enough to show us the true shape of his forehead, but it was obvious to him that the results of the surgery weren't what they were supposed to be. In fact, he told us that when he first walked into the room and looked at Max, it looked as if Max had never had any surgery at all.

The frustrating thing about the visit with this surgeon is that he wouldn't recommend for or against surgery. He told us that it wouldn't get better from this point, and could possibly get worse. But he also told us that Max is at risk of developmental disabilities just by virtue of having metopic synostosis in the first place, and that doing a secondary correction doesn't decrease his likelihood of delays. (Fortunately as of now, Max is meeting all his milestones and progressing great!) He said that Max is not, as of now, in danger from increased intercranial pressure, and that he could help Max's eyes space out more with a second surgery. But he also told us that a second surgery is significantly more complicated, due to scar tissue, increased risk of bleeding and the fact that he would be undoing something another surgeon already did. Because his recovery was complicated previously by low sodium levels, there is a greater possibility we would be facing that again as well. So we have to weigh the risks of surgery against what we think the benefits would be.

I don't know how we are supposed to make a decision like this. How can I put my baby boy through another long, painful and risky procedure. But then again, I keep picturing how I would feel if Max came to me when he was 15 or 16 and told me he wished we would have fixed this when we had the chance. I worry about doing all this for "cosmetic" reasons. But the women I have talked to whose kids have all been through this keep reminding me that this surgery isn't cosmetic, which would take something normal and make it better. It's corrective, meaning it's taking something incorrect, or defective, and making it normal.

We left the surgeon's office planning to make a return trip in two-three months so that we could evaluate with him the direction Max's head shape is taking, and make a more firm decision about surgery then. When we got home, I found this email waiting in my inbox:

I agree with you. I think the temporal area of the forehead is settling far more than I would have expected. We have two options. First, we could wait to see if his head shape improves with time. I expect that if we take that approach, we would see some improvement, but probably not normalization. Second, we could return to surgery and reposition the brow with some bone grafting to help it remain secure. The bone graft could be taken from surrounding cranial bone so we would not have to take bone from another part of his body. As difficult as it is to say, I believe we would be better off going back to surgery. I am sorry about that. But all things considered, it is probably best to do that now while he is still young enough to not remember. I would love to talk this over with you by phone or in person. My cell phone number is xxx-xxx-xxxx.

So that settles it. One cranio-facial specialist from Texas say surgery, our original surgeon says surgery, and another surgeon says surgery is an option we should consider. It looks like we're headed for another surgery.

The question is now, how do we know who is a good surgeon? I know for certain that we won't go back with our original surgeon. In fact, we're contemplating a malpractice suit at this point. How do I trust that the surgeon we met with today has the experience to tackle what he defined as a difficult and rare procedure? There is another craniofacial surgeon here that we'll meet with just to cover all our bases, but how can I just take someones word for it when it involves my son's life? Naturally, we want the best for him, and if that involves flying to Texas to get the best possible care, we'll do it and enjoy a giant steak while we're there. But even then, how am I supposed to make this decision for him? Who decided I was smart and responsible enough to do this? I don't think I signed up for this...


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  2. So.. here is my two sense when it comes to docs. You need to ask nurses. They see this stuff all the time. They will NOT outrightly say that your surgeon has poor outcomes, but they WILL suggest the VERY BEST. The Dr. they would take their own kid to in this type of situation. Texas is not too far away and would totally be worth it if it meant the best. Also.. the sodium stuff is CRAP! Seriously, lots of people have problems with sodium post-op. Also, they pump the kids full of so much crap that you never know what is causing the low levels but can bet on it being something THEY are doing.. and not something Max is doing. I know you already know that Max needs a repeat. What a slap in the face to have the surgeon say that he couldn't tell that Max was post-op but even so.. an affirmation that additional surgery is necessary. I find comfort in knowing that you are not one to be ran over. You know that you have a say... so make your voice heard and do what YOU think is best for your baby. You and
    I both know that dr's are NOT Gods (even if they think they are) and that your own feelings about the situation are what matter most.

  3. You don't know me, but I found you over on the cranio board while we were evaluating my DS's metopic ridge and head shape. We are also in UT.
    We met with Dr. Morales regarding our son and we were really impressed with him. We were told time and time again that he is the best in our state. I'm not sure if he's one of the doctors you've already seen, but we really liked him. Very professional, very serious.
    Good luck with your little guy. I hope everything works out.


  4. AAARRRGH! I feel frustrated for you! On one hand it's so nice to have the surgeon validate your instincts, but of course what next? I believe that your instincts now will be just as right as your instincts before, when you thought the surgery was less than successful. I believe that the Spirit has been guiding you and will continue to guide you--you'll know what's best for Max and you'll know how to get him what he needs. And I'll be thinking of and praying for all of you!

  5. I'm so sorry Stacy. This seriously sucks. You're right though, Max is certainly reaching his milestones. I mean he is crawling and eating everything off the ground. Totally normal kid.
    I'm sorry you're having to make this choice all over again and I can totally understand that at this point you aren't even sure who to trust. I really wish there was something I can do. Oh, we could get together and have ice cream, but really that's all I'm helpful for.

  6. Stacy, that's the spooky thing about parenting. I look at my kids sometimes and wonder if I'm destining them for therapy. Decisions like whether or not to put your kid in kindergarten this year or let them wait a year makes you feel like your child's entire life hangs on that decision...let alone something like surgery.


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