Ball back in our court

Today we met with Dr. Boydston. We were stunned at the outcome of that meeting. I'm having a little trouble organizing my thoughts, so I hope this comes out making sense.

Basically, surgery is optional. Craniosynostosis is a congenital abnormality and so would be covered by insurance, but given the amount of head growth he has already had, the fact that he is right on target median percentile for head growth, only one suture being affected, and the lack of any complicating factors, we can consider not doing surgery now and keeping it as an option for later, when he is older.

Intracranial pressure seems to be the worry. Dr. Boydston said a study from some years back that gets lots of attention in the research indicated some 15% of patients with this condition get ICP. He thinks the percentage is a lot LESS than that, and that the study was poorly designed.

He is not worried about Zyle developing any brain damage. We pressed on the details of what that would be like: regression to earlier behaviors, complaints of headaches (verbal kid) or constant fussiness (now and immediate future). I don't recall the exact answer to my concern about waiting too long, but it was basically that at the point we would see such symptoms it would not be too late to operate.

The steepest curve for head growth, naturally, occurs in the first two years of life. From then on the increments are much longer -- measured in years rather than months. So one of his points was that at 16 months, Zyle has already gone through a great deal of growth.

Reasons TO have the surgery would be our concern for normal appearance and the rest of the growth. With the top of the head not expandable, the brain compensates by pushing out the front and the back. Zyle has noticeable but not off-putting effects. We could also make a case that the surgery is relatively low risk and would allow for proper head growth.

Reasons NOT TO have the surgery: his brain and head will probably develop normally, and the appearance may not be that markedly different than what we see now.

He said he gets parents who come in convinced their child is going to have brain damage. We said, "That's us!" He wanted to reassure us that it's unlikely brain damage would result.

This is really a position I didn't want to be in: having to decide for ourselves. Seth and I talked it over with our initial impressions. My preference would be to postpone any surgery until the new year. It's an artificial timeline based on not liking our current insurance plan, but it is a useful one for giving us decision making time.

Seth and I discussed the situation from regrets: have the surgery and something goes wrong, you regret having it. Don't have the surgery and something goes wrong, you regret not having it.

As for the rest of our concerns, they were knocked out very quickly.
* We can have the surgery at Egleston rather than on the northside at Scottish Rite.
* A CT scan takes only about 45 seconds and usually doesn't require the child to be sedated.
* The anesthesiologists would be involved in surgery do this all the time and are absolute experts (more chance of getting struck by lightning than dying from anesthesia, he said).
* A craniofacial surgeon would be involved in the surgery.
* The surgery does not reach "anywhere near" the brain.
* Surgery could be scheduled within a short (less than a month) time frame if we decided to do it.
* Follow-up procedures, if any, would likely be outpatient and not done by him. In his opinion, those are typically unnecessary but just done because parents are trying to smooth out harmless protrusions.
* Recovery period is less than a week in the hospital, and within two weeks back to normal activities.

I also asked, given the way the conversation went, that if we walk out the door deciding not to do surgery and then change our minds later, where do we re-enter the process. Do we have to start all over again. The answer was No, just call us. And it was "just call us" if you think of other questions after you leave here.

There's a lot to think about, a lot of opportunities for 'what if.' We're going to go back and look at pictures and see how Zyle's head shape has changed over time. As we left, there was a 4-week-old baby in the waiting room whose head shape looked exactly like Zyle's. What I thought was just the effect of suctioning hard to get him out at birth turned out to be something far more serious. And frankly I blame attention to the brachiocephaly--flat head--phenomenon for making it less likely for me to recognize that anything was pathologically unusual about Zyle. I just thought my kid had the opposite of that and could use a little more flattening.