We finally came home that Easter Sunday, around 4pm. We strolled Sam back to the pink line and rode downtown, switching to the red line and riding down to Roosevelt to get lunch at Eleven City Diner. The waiter asked us “how old?”
It’s still amusing to me that after all that trouble, something that causes a lot of people some consternation – the question of when, if ever, to bring our child “out,” was settled without any discussion, and before we even really got home. Of course we were bringing our 5 day old (who had had so many complications and nearly driven his parents to utter despair) to a diner. Germs? Are they even real? If germs hadn’t gotten him by then, I thought at least, he must be immune.
In fairness, Sam has had a couple of colds, and very briefly one fever, probably brought on as a side effect of a vaccination. It hasn’t been all roses since those first five days though. For one thing, perhaps because of the VSD (three small holes between his right and left ventricle, which might make his heart pump a little harder to distribute blood, and cause some very small admixture of oxygenated blood going out to the body and deoxygenated blood going out to the lungs) he’s had trouble gaining weight.
This started about two months in. Before then things seemed to be progressing fine, but he just kept getting longer but remaining as skinny as can be. This again meant a whole battery of specialists: nutritionists, gastroenterologists, cardiologists, a lactation consultant, our pediatrician, and now both a physical therapist and an occupational therapist. Dozens of appointments and the most we’ve really gotten out of anyone is “perhaps it’s related to the VSD.” Many, many tests have ruled out a whole series of very rare disorders. He’s just gaining weight slowly. He’s tall and skinny. Until his 6-month checkup – at which we found out that a barrage of solid foods have gotten his weight up much more successfully – we’ve had appointments at least every two weeks, often more than that. And they’re all just “monitoring to make sure everything’s okay.” Near the 4 month mark, we started fortifying his bottles with formula. Near the 6 month mark, we started giving him some solid food. His head is a bit big for his skinny body, and so he might be a little behind on neck strength and some crawling-related skills.
I’ve read a few stories about births, and a lot of them go something like this.
#1: We set out to have a natural birth.
#2: When we got into it we discovered the medical world had a lot to help us.
#3: Now our view of medicated and natural birth is more complicated.
This is, more or less, the narrative of the central thread of The Business of Being Born. Sure, that movie has a lot more to offer by way of criticism, but I think its central birth story falls prey to a particularly pernicious sort of narrative, one that sees “natural birth” as some sort of aesthetic (feminine) preference, and one that gets disrupted by serious medical (masculine) realities. It ends on a highly ambivalent note. Because we usually take ambivalence as a sign of sophistication, evidence that we can “get beyond partisan squabbles,” proof that we are centrists of whatever sort. This quality is seen – in contemporary America anyway – as a mark of reasonableness.
I must say I don’t feel all that ambivalent at all. Coming through the other end, you might think I’d say “thank god for the medical establishment.” Taking stock at 6 months’ remove, I just don’t feel that way.
The delivery went how it did because of Pitocin. I have no idea what would have happened had the birth not been induced chemically. There are some stories that end badly when that doesn’t happen. There are others, though, probably many, many more, that end normall (and there are also loads of stories were a Pitocin-induced birth ends badly as well). The baby comes when it comes, the woman’s water breaking proves not to be decisive. I don’t really know. I’m willing to believe Pitocin helped Brooke and Sam avoid a marginal risk of infection. I have no idea how to calculate that risk, and I also have no idea whether anyone else actually has, and how it weighs against other potential side-effects of Pitocin, for either the mother or the child. No one ever asked us, or informed us of this.
The delivery was, however, natural in the sense that it was pain-reliever-free. That went how we wanted it to go. And the reason was because of Brooke’s incredible strength, stubbornness, Noelle, and Becky’s classes, classes which taught us how to handle this ourselves, or at least to advocate for ourselves better than we otherwise would have.
The apneic event may seem like a setting where the hospital was vital. But it really wasn’t. Dr. Patel told us about this event, that he had done a lot of research about babies in this type of circumstance, and that in 99% of the cases, there was no plausible explanation, and so, “Rather than doing tens of thousands of dollars worth of tests, better just to accept that Sam was most likely okay.” I appreciated that at the time, but when I looked over our bills, the fact of the matter is, they DID do tens of thousands of dollars worth of tests. Dr Patel explained that one of the core problems is that we don’t even know in these instances whether there actually was a cessation of breathing. That is certainly true in our case. Brooke and the nurse both thought something was wrong. Several hours, an emergency situation and a battery of tests later, he was fine. But the only actual intervention that may even have had any effect on Sam was the remarkably low-tech decision to blow air into his mouth. And even that may have had no effect, because he may have been breathing the whole time. And any doctor or midwife delivering a baby at home would have had that device on hand. And without it, we still could have (and would have) blown air into his tiny mouth using one of ours.
The bilirubin lights, as I’ve pointed out, surely had a direct and demonstrable effect on Sam. His skin turned less yellow and his blood’s bilirubin level got low enough that his liver could manage the process. High bilirubin levels in some extremely rare cases cause brain damage. But in most other cases, they go away on their own. The doctors explained that the solution was so easy that it didn’t matter how low the risk was.
In a way, this is the model for medical care we want to believe always applies. There’s low risk, perhaps, but the solution works so well that, well, why not? As I’ve tried to show, admittedly anecdotally, that’s not how it is in most medical circumstances.
The discovery of Sam’s heart murmur, and the attendant echocardiograms have revealed nothing more than what the first attending physician noticed, also using his low-tech stethoscope: that Sam has a heart murmur. The tests allowed us to attach a name to it – a VSD – and the other doctors allowed us to suspect that this may be the cause of Sam’s poor weight gain. But as we’ve learned on numerous internet forums, kids with heart murmurs tend to have weight gain problems. Again, this is not something that the medical-industrial complex alone let us discover or cure – the cure, ultimately, was something anyone in any age would have determined: the slow introduction of more and more food.
My point is this: before insurance, our two hospital stays and follow-up appointments cost somewhere in the neighborhood of $70,000. This is a completely unsustainable amount of money per baby to be spent. It means we spend so much on each baby that we cannot cover every baby. It means the system keeps having this bloat, inefficiency, cost shifting, and so on that it gets worse and worse, making that number spiral higher and higher, meaning fewer and people getting care.
And in the end, what did that $70,000 buy us that couldn’t have been handled without it? I’m really not all that sure. It’s tempting to say that’s just because we got lucky, that none of these complications required higher-tech solutions, that Brooke didn’t have any health difficulties during labor, and so on and so forth. And a related point here: those interventions sometimes end up costing $70,000 (note – that DOESN’T include a C-section or anesthesia, which could easily have doubled our total) – those interventions, at least a decent amount of the time, make things worse, not better, for the mother, the baby or both. Our system is often ineffective, always expensive and chronically inequitable. That’s pretty much the worst of all possible worlds.
At some level, Sam could have been born with much less of that money having been spent. If we all tried to make that shift, we’d all move towards more universal coverage, less male-dominated medical-industrial complication, and more shared humanity.
Yes – I believed that before Brooke was even pregnant. Yes, I still believe that now. There were some dire and fearful moments in between, and for a lot of people, that direness and fear becomes the justification they cling to for why we do medicine the way we do in the US. But they’re not processing their experiences anymore than a kidnapping victim who is confused by Stockholm Syndrome into thinking that their kidnappers somehow care about them. We go through these things in such a daze, we sort of assume the doctors allowed to come out positively. We set aside our collective wisdom as a species and so medical care becomes a self-fulfilling prophecy.
My mother had three of my siblings at home, in the 80’s, in an affluent suburb of Chicago. A doctor was there, but in at least one case (my brother Sam) the baby arrived before the doctor. Sam also ended up in the hospital because he had an infection (totally unrelated) but in a few days everything was okay. Those births must have cost at least 1/10 what ours did, and probably even less than that. Sadly, it’s barely even legal any more to do what my mother did. But if everyone – or everyone with a low-risk pregnancy – were doing that, or something much more like that, there’d be a lot more money to go around. And then we’d be a lot more human, equitable and a lot healthier, and a lot less insane. To me, the choice is a no-brainer.