Sunday, April 27, 2014

Big Heart Son

My second son (whom I often refer to as the Smaller Animal, or occasionally the tadpole) was born with a heart conditon.  At the time, I didn’t have a blog (were blogs even invented back then?*), but I did have a website, since this was during the time I ran my own company.  So I took advantage of that and wrote a series of web pages about the experience.  Of course, my company is long gone, as are all its servers, and thus its website, but you know what they say ... the Internet is forever.  In this case, the Wayback Machine provides the trip down nostalgia lane.  The pictures are all gone, but the links all work and all the text appears to be there.  You could go read that, if you’re interested in a lot of details about the birth and medical stuff.

But it occurred to me that I haven’t really discussed the condition on this blog.  That occurred to me as I was telling people at my new work that I was taking the boy for his first treadmill test.  Of course, this being a new(ish) job, some of them had no idea what I was talking about.  (Some of them did, since I’m not the only person from my old job to land at my new job.)  Thus I was inspired to track down that very link to the Wayback Machine I threw out above.  Which is nice and all, and may be interesting to some, but it’s also pretty darned verbose—even for me—and very outdated.  The situation today is a little different.

First, the executive precis for those who don’t want to have to read all the gory details:

Your heart has 4 valves in it; their job is to open and close as the heart pumps so that blood can move forward where it’s supposed to go, but not backwards.  To do that job, they have flaps called “cusps.”  If the cusps don’t open all the way, that’s called “stenosis.”  My son was born with aortic valve stenosis, which means that blood couldn’t flow normally into his aorta because the valves weren’t opening all the way.  As a result, his heart had to pump much harder than usual.  That’s not sustainable, however, so doctors performed an emergency procedure on him to force the cusps open.  So now he has no problem getting the blood to move forwards.  However, when they force the valve open like that, it inevitably causes some tearing, so now the valve can’t close properly.  So the blood leaks backward (which is called “regurgitation”), and the flow can’t achieve full efficiency.  This is still a problem, but happily a much less serious problem.  The doctors estimated that my son’s heart wouldn’t last much more than a week with the stenosis.  With the regurgitation, it could last years, perhaps even decades.

It could last that long ... but perhaps it won’t.  In practical terms, that means that we’ve taken our child to get an echocardiogram (which is a bit like an ultrasound, except on your heart instead of your unborn child) every six months for his entire life, and it likely won’t be stopping any time soon.  This leads to an interesting cognitive dissonance: on the one hand, it becomes routine, almost commonplace; on the other, your stress level goes through six-month cycles of peaking to insane levels because you dread that this time is the time when they’ll finally tell you he needs the surgery.

Because the chances are very very good that my kid will, at some point in his life, need to have that valve replaced.  Which is a pretty scary prospect.  But there are important reasons for waiting.

First of all, whether it’s replaced by an artificial valve, a valve from a pig, or a valve from a human donor,** replacement valves always wear out and have to be replaced again.  And, on top of that, replacement valves aren’t going to grow along with the patient.  That means that if you have to replace a valve before the patient’s heart is fully grown, you’ll have to replace it even before it wears out because eventually it will be too small.  So, the sooner you do the replacement, the more often you’ll have to do it.

The second important reason is that, if we had replaced his valve when he was born, that would have meant surgery, and any time you use the words “open-heart surgery” and “newborn” in the same sentence, that’s pretty damned scary.  Even today, if they tell us it’s time to do the replacement, we’ll still be talking surgery—specifically, a Ross procedure, which means swapping the aortic valve with the pulmonary valve (because the pulmonary valve is in front of the aortic valve, it’s easier to replace; therefore, you replace the bad aortic valve with the patient’s own pulmonary valve, which will grow along with his heart, then the replacement, which you know won’t grow and will eventually wear out anyway, goes in the pulmonary position where it’s easier to get at for the next surgery).  However, today they can also replace a valve without surgery: it’s called transcatheter aortic valve replacement, and it means that, instead of having to cut the patient open, they can use a cathether (small tube) threaded through the arteries and into the valve, and replace the valve via the catheter.  Now, today, they will only use this procedure if the patient absolutely can’t handle the surgery for some reason.  But, in the 8 years my son has been alive, it’s progressed from “theoretically possible” to “a viable alternative that’s almost as good as surgery.”  If we can wait 8 more years, maybe it’ll be better than the surgery.

So we wait.  The doctors assure us that it will be a very gradual change; we won’t be in a situation where we go in to get a check-up and they end up rushing him to the hospital (which is what happened when he was 2 days old, so thank goodness we won’t have to go through that again).  In fact, they told us that, if they identify the problem during the school year, they’ll most likely schedule the surgery for the following summer.  You’d think this would make it better, and I suppose in some ways it does.  But it also means that you tend to memorize every number they throw at you (thickness of the heart wall, pressure gradient between systole and diastole, size of the area allowing the leakage, etc) then freak out whenever one of them gets bigger.  Even though, of course, you have no real concept of scale for any of these figures.  Also, there isn’t just one number to focus on: there’s lots of them, and they interact in non-intuitive ways, and just because one gets worse doesn’t mean you should panic.  But it doesn’t mean you shouldn’t, either.

So now that my son is 8 years old, his cardiologist recommended him for a stress test.  Just like an adult would, he runs on a treadmill, all wired up on a continuous EKG, and then they do an echocardiogram after he gets tired to see if heavy exercise is likely to cause any problems that they couldn’t detect while he was just laying quietly on the table.  We went for this test two days ago, and I think he did pretty well.  His heartbeat didn’t get too high, and, from what limited ability I’ve picked up to read an echo over the past 8 years, I didn’t see anything to be concerned about.  His breathing was never labored; at his age, they stop the treadmill after getting up to 3.4MPH with a 14% incline, but I think he could have gone on to the next stage.  We still have to wait for the cardiologist to review the results, but it seems like, for now, we’re back to waiting.

One thing that struck me as I reread what I wrote 8 years ago is this quote from near the end:

We choose to believe that kharma, or the cosmos, or maybe even some supreme being somewhere (your “deity of choice”, as I am wont to say) is trying to tell us something.  We’re not entirely sure what it is yet, but we’re tentatively operating under the assumption that it has something to do with appreciating each other more, and letting go of the little things.  After this experience, some of the things that might have upset or worried us before seem a bit petty now.

And, hey, if that’s the wrong lesson, or even if it turns out there’s no higher power running around the universe at all, it’s probably still a decent attitude to cultivate.

I’d like to tell you that we took this lesson to heart and never let petty things get to us any more.  But I’d be lying.  Perhaps it’s the routine of the continuous tests that never seem to get easier but happily never bring bad news.  Perhaps it’s our attempts to make sure we treat our middle child just like our other two children—it’s desperately difficult not to spoil a child with a life-threatening condition hanging over his head, and I’m not entirely sure we’ve succeeded.  Perhaps it’s just that anything—even the terror we went through after his birth—can be internalized, categorized, and put behind us.  We move on with our lives, and that means we fall back into our normal behaviors, for better and for worse.  Sometimes I think that, as stressful as that time was for us, we’d do well to keep it close.  Most of the family arguments we end up having really do seem silly in the light of this sobering truth that we live with (and mostly ignore) every day.

But it’s also true that I feel lucky that we can have those silly arguments.  Without him, I don’t know that we’d be having those arguments, or even any arguments.  We wouldn’t be who we are.  No more so than the other two, but certainly no less so either, our leaky-hearted son is part of what makes us us, both individually and collectively.  I’m glad we got to keep him.  Hopefully that will continue for many years to come.

* Wikipedia says they were.  Happily, I was blissfully unaware of them.

** Interestingly, pig valves are more commonly used than human ones.  This is partially because replacing human valves is more complex surgically, and partially because heart valves are in short supply.  I guess that latter is because it’s pretty rare that you’d find a heart where the valves are working well but the rest of the heart is damaged, and, if the rest is not damaged, they’d want it for a heart replacement and not just cut the valves out of it.

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