I’m doing that thing you do

You know that thing you do. When you have to stay up all night on a Sunday because there's no nurse, so instead of revising the first draft of your book you get on PubMed and search for every article you can find about pediatric airway reconstruction?

What? You don't do that?

Yeah, it's probably something I should stop doing, too.

And yet, something interesting always pops up. Like this. Basically, it's an abstract saying that infants who have severe, symptomatic subglottic stenosis (like Ike), can have the laryngotracheoplasty surgery as soon as they are diagnosed – avoiding the tracheostomy completely – with a comparable outcome to babies who are trached, get bigger, and then have the surgery.

Well WE were never told that was an option. I'm sure, though, there are very few places where it is an option. It really makes me think, though, that as more and more babies are born early and spend time in NICUs, the reality of acquired subglottic stenosis is always there. It may even increase as more babies are saved. This makes me wonder if the ENT world is ready to be more aggressive in its treatment of subglottic stenosis. If you know it's going to happen, and you know it's potentially going to get worse, don't you want to have the doctors and systems in place to offer choices for treatment? It may be easy for an ENT to walk into an operating room, trach a baby and say, "See you in three years for possible decannulation!" But it's not so easy for the family – and especially not easy for the child. Suddenly you're faced with the potentialities for life-threatening health problems at every turn, developmental and physical delays because of hospitalizations and illnesses, astronomical healthcare costs (both emotionally and literally), etc. All things that could possibly be avoided by fixing the problem immediately, instead of traching and waiting.

I know not every family would agree to major airway surgery on a 6 month old baby. They might prefer to have a trach placed with the hopes that the child could outgrow the stenosis. What I don't like, though, is being forced into that decision because there are no other choices offered.

Could Ike have had the LTP as an infant and avoided all of this time with the trach? I don't know. Would we have decided to go ahead with the surgery at that time if we had been given a choice? I don't know. It was a terrible, scary time, and we were getting a variety of diagnoses from a variety of well-meaning but in-over-their-heads doctors. If I knew everything then that I know now would I have insisted on some kind of magical airlift to Cincinnati Children's? Of course.

The study that I read tonight was submitted for publication four months before Ike was born, based on data gathered from Cincinnati.

If we had seen an ENT familiar with symptomatic subglottic stenosis when Ike first presented with stridor, there's a chance we could have had an airway repair before he got so sick that he stopped breathing. There are a lot of what-ifs when you read articles like this. A lot of 20-20 hindsight.

As a mama, though, I like to educate myself and to be educated about the things happening with my children, and the decisions that need to be made (or might need to be made). But you can only educate yourself about so much, unless you have a time machine or a note of dire warnings left on your pillow from your future self.

It's frustrating to read articles like this, to see a divergent path from the one we took. We weren't aware of the available paths, though, and I think even if we were aware, the path in this study would not have been offered to us. So that begs the question, who, without that time machine, is going to pack up their healthy but stridorous just-out-of-the-NICU child, and take him 1100 miles away when the doctors at home say he's fine? Would I have been crazy enough to do that? I don't know.

There's a lot I don't know. And a lot I second guess. And a lot I what-if. Especially on Sunday nights when I should be revising instead of reading PubMed.

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2 thoughts on “I’m doing that thing you do

  1. I read that study a while back. The problem with studies is it is tested out but does not become common practice for a long time after a positive outcome. Especially in the medical world. Then once it does become common practice, the docs in the area have to be educated and trained in the new procedure. This can take years. Maybe in 20 years, there will not be trached babies with Ike’s diagnosis. But you can’t beat yourself up with the what ifs. That won’t get you anywhere but backwards and you have to move forward. See you Thursday! Can’t wait to see the little dude!!

    Like

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