Category Archives: health care

science gone wrong, pt 1: are vaccines really causing higher infant mortality rates?

This study, purporting to show that greater numbers of vaccines in the first year of life are associated with greater risk of infant mortality, came across my radar recently. I thought I’d take a moment to look at it in part of a series of posts on the emotionally fraught relationship between science and our everyday lives. This post is the one that has the most to do with parenting; the ones that follow will be more about a health scare I had recently and some of the changes it’s wrought on our life.


Neil Miller and Gary Goldman claim to have found a correlation, on a population scale, between the number of vaccines children receive in the first year of life in a given country and that country’s infant mortality rate. (Full text of the paper in PDF here.) Their work is riddled with conceptual and procedural problems, and of course whenever someone asserts a correlation without establishing a concrete causal mechanism, we should be skeptical. (Using the phrase “synergistic toxicity” over and over again does not count as establishing a causal mechanism.) But since this kind of “research” frequently gets turned into news items that get circulated among worried parents trying to make good decisions for their kids, I thought I’d delve into it a little bit, leaning gently on a couple of excellent analyses from David Gorski at Science-Based Medicine and Catherina at Just The Vax.

A summary of the problems addressed by Catherina and Dr. Gorski:

1. The paper is inconsistent in its definition of a “dose.” Catherina lays it out neatly:

[T]he way Miller and Goldman are counting vaccines is completely arbitrary and riddled with mistakes.

Arbitrary: they count number of vaccines in US bins (DTaP is one, hib is separate) and non-specific designations (some “polio” is still given as OPV in Singapore), rather than antigens. If they did that, Japan, still giving the live bacterial vaccine BCG, would immediately go to the top of the list. That wouldn’t fit the agenda, of course. But if you go by “shot” rather than by antigen, why are DTaP, IPV, hepB and hib counted as 4 shots for example in Austria, when they are given as Infanrix hexa, in one syringe?

Mistakes: The German childhood vaccination schedule recommends DTaP, hib, IPV AND hepB, as well as PCV at 2, 3 and 4 months, putting them squarely into the 21 – 23 bin. The fourth round of shots is recommended at 11 to 14 months, and MenC, MMR and Varicella are recommended with a lower age limit of 11 months, too, which means that a number of German kids will fall into the highest bin, at least as long as you count the Miller/Goldman way.

(If you’re bored and want to check their work, here are the vaccine schedules from Europe that Miller and Goldman claim to have relied on. They cite UNICEF’s website as their source for non-European countries, although, since they don’t provide a URL for a specific page on the site, I’ve been unable to find that data.)

The definition of a “dose” is critically important here. If you want to entertain the hypothesis that vaccines are in some way “toxic” because of, for example, preservatives or other foreign material, then the number of antigens matters less than the number of shots or vials. On the other hand, if you want to say that the antigens are the toxic substance, then as Catherina points out you have to account for different levels of antigens in different types of vaccines for the same diseases. Miller and Goldman’s vague and confusing approach does little to tease out or account for these differences.

2. Countries don’t all count dead infants the same way. Dr. Gorski quotes Bernardine Healy, former director of the NIH:

[I]t’s shaky ground to compare U.S. infant mortality with reports from other countries. The United States counts all births as live if they show any sign of life, regardless of prematurity or size. This includes what many other countries report as stillbirths. In Austria and Germany, fetal weight must be at least 500 grams (1 pound) to count as a live birth; in other parts of Europe, such as Switzerland, the fetus must be at least 30 centimeters (12 inches) long. In Belgium and France, births at less than 26 weeks of pregnancy are registered as lifeless. And some countries don’t reliably register babies who die within the first 24 hours of birth. Thus, the United States is sure to report higher infant mortality rates. For this very reason, the Organization for Economic Cooperation and Development, which collects the European numbers, warns of head-to-head comparisons by country.

Miller and Goldman claim to have accounted for these differences and quote a CDC paper which says that “[I]t appears unlikely that differences in reporting are the primary explanation for the United States’ relatively low international ranking.” Of course, this statement in itself is quite vague, giving no idea what percentage of the difference in rankings the reporting problem plays. But it also begs the question, “What is the primary explanation?” The same CDC paper gives a perfectly reasonable answer, to which we shall return later.

In the meantime, this paper commissioned by the Congressional Budget Office on the subject of America’s seemingly awful infant mortality stats provides more detail on the difficulties of accurately comparing IMRs:

In countries where physicians are more aggressive about attempting to resuscitate very premature newborns — of which the United States is probably the leading example — extremely small neonates are more likely to be classified as live births than in countries with less aggressive resuscitation policies. Thus, for example, if little attempt is made to resuscitate newborns weighing less than 500 grams (1 pound, 2 ounces), these births may be classified as fetal deaths and not be included in either the live birth or the infant mortality statistics. By contrast, when attempts are made to resuscitate the tiniest newborns, they are more likely to be classified as live births, although most will subsequently die and then be included in the infant mortality statistics.

(We’ll get back to this idea of aggressive treatment in the final section.)

3. Miller and Goldman selected data from a single year, 2009. But why? Surely an analysis over multiple years, or multiple decades, would be more useful. We could be more certain that the IMRs in 2009 weren’t some sort of statistical fluke. And we could watch IMRs move (or not) according to changes in vaccination schedules. As Catherina points out,

For example, in the early 1980ies, Germany’s infant mortality was about 5 times as high (10000 infants died per year) than it is today (2000 died in 2009 with approximately the same birth rate), however (in Miller’s and Goldman’s twisted logic), the vaccination schedule contained far fewer vaccines in the first year (essentially just DT and polio, since the whole cell pertussis was not given between 1974 and 1991, the aP not yet introduced, the MMR given in year 2, no hib, nor hepB, nor PCV given either), while Germany was already very much a “developed country”.

4. Miller and Goldman do not consider the whole world. It’s tempting to say that they’re on stronger ground here — that you want to compare wealthy, industrialized countries to other wealthy, industrialized countries. But they don’t seem to be particularly interested even in other industrialized and/or wealthy countries whose IMRs fall below that of the U.S. — say, countries in Eastern Europe, or the wealthy Arab states — to see whether their correlation holds up further down the list. Gorski:

[S]ince the focal point of the analysis seems to be the U.S., which, according to Miller and Goldman, requires more vaccine doses than any other nation, then it would make sense to look at the 33 nations with worse IMRs than the U.S.

Be that as it may, I looked at the data myself and played around with it. One thing I noticed immediately is that the authors removed four nations, Andorra, Liechenstein, Monaco, and San Marino, the justification being that because they are all so small, each nation only recorded less than five infant deaths. Coincidentally, or not, when all the data are used, the r2=.426, whereas when those four nations are excluded, r2 increases to 0.494, meaning that the goodness of fit improved.

In other words, even among the countries above the U.S., Miller and Goldman cherry pick the data, dropping small countries that don’t make the data fit the way they want it to. (4 countries out of 33 is an 8th of the data being excluded, in case you were counting.)

Are these decisions reasonable? Would including Russia or Andorra have made the data clearer, or muddied the waters? I’m not sure, but in light of other methodological decisions, this is questionable at best.

5. What’s with the grouping? Why sort the countries into groups based on the number of vaccines, and then plot the average IMR of each group, instead of just plotting all the data points separately? Gorski again:

[F]or some reason the authors, not content with an weak and not particularly convincing linear relationship in the raw data, decided to do a little creative data manipulation and divide the nations into five groups based on number of vaccine doses, take the means of each of these groups, and then regraph the data. Not surprisingly, the data look a lot cleaner, which was no doubt why this was done, as it was a completely extraneous analysis. As a rule of thumb, this sort of analysis will almost always produce a much nicer-looking linear graph, as opposed to the “star chart” in Figure 1. Usually, this sort of data massaging is done when a raw scatterplot doesn’t produce the desired relationship.

Indeed. Of particular note is Group 2, countries with a vaccination schedule of 15-17 “doses” in the first year. Group 2 only includes 5 countries, and one of those countries is Singapore, which has the best IMR in the world (2.31) and calls for its infants to receive 17 vaccines doses in their first year, according to Miller and Goldman’s counting. Because Group 2 is so small, Singapore is clearly dragging down the average IMR of the whole group — from 4.30 to 3.90. Take out Singapore, which is clearly an enormous outlier, and Group 2 has about the same IMR as Group 3, which makes the linear relationship a lot less neat. Also, 4.30 is very similar to Denmark’s 4.34, and Denmark only requires 12 vaccines in the first year. And speaking of Singapore, if this linear correlation based on vaccination schedules is so strong, why does Singapore have such a drastically low IMR with 17 vaccine doses in the first year, when Italy and San Marino have drastically high IMRs (5.51 and 5.53, respectively) with only a single dose more (18) per year? Naturally, there will be outliers in any linear regression, but it seems that when you get done smoothing out the outliers here by dropping data points and sorting the data into bins, you’ve essentially hidden half the statistical reality.

6. They fall prey to the “ecological fallacy.” Gorski once more:

The ecological fallacy can occur when an epidemiological analysis is carried out on group level data rather than individual-level data. In other words, the group is the unit of analysis. Clearly, comparing vaccination schedules to nation-level infant mortality rates is the very definition of an ecological analysis.

In other words, measuring correlations between variables on the population level tells you nothing about the correlation on an individual level, and indeed is likely to vastly overstate the likelihood of such a correlation. For example, let us suppose that Italians have fewer heart attacks than do Englishmen, and yet eat pasta at a much greater rate. Can we conclude that pasta is preventive against heart attacks? No, because, among other things, you haven’t demonstrated that the pasta-eating individuals in the Italian population are the ones getting fewer heart attacks. Perhaps there’s a smaller subset of Italians who eat hardly any pasta at all, yet get plenty of vigorous exercise, and therefore drag down the national average incidence of heart disease.

Similarly, if you want to find out if a heavier vaccine schedule in the first year correlates with higher infant mortality — or, to be even more specific, whether it correlates with higher rates of SIDS, since Miller and Goldman argue that SIDS and unexplained deaths caused by vaccine “toxicity” are probably the real culprit here — you should do a study following outcomes for individual kids who receive different schedules of vaccines. Trying to track a phenomenon, if there is one, by comparing different whole populations is both inefficient and brutally error-prone.

To their credit, Miller and Goldman attempt to address this problem in a section titled “Ecological Bias.” To their discredit, their explanation is simply awful:

Although most of the nations in this study had 90%–99% of their infants fully vaccinated, without additional data we do not know whether it is the vaccinated or unvaccinated infants who are dying in infancy at higher rates. However, respiratory disturbances have been documented in close proximity to infant vaccinations, and lethal changes in the brainstem of a recently vaccinated baby have been observed. Since some infants may be more susceptible to SIDS shortly after being vaccinated, and babies vaccinated against diarrhea died from pneumonia at a statistically higher rate than non-vaccinated babies, there is plausible biologic and causal evidence that the observed correlation between IMRs and the number of vaccine doses routinely given to infants should not be dismissed as ecological bias.

[emphasis mine]

So after admitting that they have in no way correlated these higher rates of infant mortality with actual vaccination on the individual level, Miller and Goldman attempt to razzle-dazzle the reader with a lot of scary-sounding stuff. But, for example, the “lethal changes in the brainstem” occurred in a single child after a vaccination — to infer anything from that would be a classic case of “post hoc, ergo propter hoc” reasoning. I’m sure you can find a single case of a child who died of bullet wounds after being vaccinated, too.

And the babies who died of pneumonia at a statistically significantly higher rate after receiving the rotavirus vaccine? That was in a single study out of eight studies conducted on the safety of Rotarix, the vaccine in question. When you compile all eight studies, the relative risk of pneumonia between Rotarix and placebo is exactly 1, according to this exhaustive FDA briefing (PPT — skip to slide 59).

I’m not going to bother batting at the other examples, but you see where this is going. And the problem of the ecological fallacy is probably the most damning, because even if all the other problems in this paper were fixed, this alone would be enough to keep it from making any sense as science.


Finally, I’d like to discuss that CDC report I promised to come back to, and pile on a criticism of my own that neither Catherina nor Dr. Gorski really dealt with. Namely, we know the risk factors that bring the U.S.’s IMR up. Alice Park discusses them in a 2009 article for Time:

Starting in 2008, the March of Dimes began tracking three of the major contributors to the high preterm birth rate — lack of insurance among women of childbearing age, rates of cigarette smoking and the rate of babies born preterm, but at the tail end of pregnancy, between 34 and 36 weeks….

By far the biggest contributor to the high premature birth rate is the rate of so-called late-preterm births. About 70% of babies born too early in the U.S. are born between 34 and 37 weeks. There are many reasons for these early deliveries, making it particularly difficult to target one or even a few factors and address them head-on. The increase in multiples — twins, triplets or more — is one contributor. The rise in assisted reproductive technologies, such as in vitro fertilization, is another; these techniques are associated with both an increased risk of multiples as well as a higher risk of premature delivery, even of singletons….

This is relatively undisputed, as far as I can tell from reading through literature on America’s woeful infant mortality rate. What do Miller and Goodman make of this? From the paper:

Preterm birth rates in the United States have steadily increased since the early 1980s…. Preterm
babies are more likely than full-term babies to die within the first year of life. About 12.4% of US births are preterm…. Preventing preterm births is essential to lower infant mortality rates. However, it is important to note that some nations such as Ireland and Greece, which have very low preterm birth rates (5.5% and 6%, respectively) compared to the United States, require their infants to receive a relatively high number of vaccine doses (23) and have correspondingly high IMRs. Therefore, reducing preterm birth rates is only part of the solution to reduce IMRs.

There are several squirrelly points packed into this paragraph. First, note the phrase “within the first year of life,” which, while part of a technically correct definition of infant mortality, leads us to the question: why are we counting all deaths in the first year in this study anyway? Surely the correct measure of whether vaccines influence mortality would exclude all deaths prior to the first vaccine — i.e., all deaths that occur at or immediately after birth.

Second, the cherry-picking of Ireland and Greece as countries with low preterm birth rates and high IMRs, and then imputing those figures to vaccination rates is obviously putting the cart before the horse. If you’re trying to draw correlations of this kind, why not include a table of preterm birth rates and use them to factor out that difference in IMRs before trying to measure a difference attributable to vaccine schedules? I mean, if you have those preterm birth rates handy, which Miller and Goldman seem to, although they don’t provide a footnote for the Ireland and Greece numbers.

Anyway, here’s an interesting graphic from that CDC paper Miller and Goldman cited to show that reporting differences did not account for the bulk of the difference in IMRs. It shows what the US infant mortality rate would look like if we had Sweden’s level of preterm births:

What does this tell us? It tells us that, exactly as the CDC, the CBO, and the March of Dimes have concluded, much of the difference in IMR between the U.S. and other countries can be attributed to pre-term birth rates. And what does that tell us about this supposed correlation between vaccination and IMR?

It tells us that having an aggressively interventionist medical culture in the U.S. leads, somewhat paradoxically, to higher IMR. Remember that many of those preterm births are the result of fertility treatments. And U.S. physicians are more aggressive about attempting to resuscitate very small babies, even though most will die anyway; this leads to a much higher count of live births followed by death than in countries that treat those unbreathing preemies as still births. And aggressive monitoring of fetal health, and a greater willingness to either induce early labor or perform caesareans, may also play a role.

And then there’s this interesting paper from the New England Journal of Medicine that finds that, paradoxically, the rapidly increasing numbers of new neonatal ICUs in the U.S. may be responsible for at least some of the rise in infant morbidity and mortality:

In regions with a greater supply of beds and neonatologists, infants with less serious illness might be more likely to be admitted to a neonatal intensive care unit and might be subjected to more intensive diagnostic and therapeutic measures, with the attendant risks of errors and iatrogenic complications, as well as impaired family–infant bonding.

In short, if there is a correlation between vaccination schedules and IMR — a fact not proven here — there may be a simple explanation (e.g., a more aggressive approach to medicine overall) that does not require invoking unproven and unexplained “toxicity” in vaccines.


Where does all this leave us, in terms of what I was talking about at the beginning, the relationship between science and our everyday lives? Well, it counsels skepticism, certainly, when “news” of a disturbing “scientific” discovery shows up on parenting forums or in our inboxes. And of course it challenges each of us to become more scientifically literate in our reading — which is why I occasionally undertake these close examinations of scientific subjects related to parenting.

But this process is exhausting. To really delve into this paper, to take it apart and understand it to my own satisfaction, has taken two days and 3500 words. I can’t possibly do this with each piece of scientific information (or misinformation) that comes my way. For the most part, I’m forced to shrug and rely on professionals at the CDC, the FDA, and the doctor’s office to steer me the right way. But what happens when the professionals start to seem untrustworthy or themselves misinformed? What do you do when your need for expert knowledge is undermined by an almost paranoid sense that the experts are not on your side? And how do you avoid going too far in the other direction and falling victim to things like vaccine denialism?

I’ll try to talk more about that in the next couple of entries in this series.

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the robots… are coming

USA Today led with this story about rising military health care costs on Thursday. Reading just the headline, you might think, “Oh great. Another bloated, inefficient government health care program.” And indeed the statistics cited are alarming:

Total U.S. spending on health care has climbed from nearly $1.5 trillion in 2001 to an estimated $2.7 trillion next year, an 84% increase.

As a share of overall defense spending, health care costs have risen from 6% to 9% and will keep growing, said Navy Lt. Cmdr. Kathleen Kesler, a Pentagon spokeswoman.

But look closer. What’s causing this rise in health care costs? Is it that we pay doctors too much? Is it overuse of medical resources by patients who are shielded from the expense? Is it the passage of Obamacare?

In this case, no. The costs are driven by two things:

The rapid rise has been driven by a surge in mental health and physical problems for troops who have deployed to war multiple times and by a flood of career military retirees fleeing less-generous civilian health programs….

Specifically,

Behavioral-health counseling sessions for troops and family members rose 65% since 2004. The Pentagon paid for 7.3 million visits last year — treatment of 140,000 patients each week, according to TRICARE numbers….. Many new patients are children suffering anxiety or depression because of a parent away at war. Children had 42% more counseling sessions last year than in 2005, TRICARE numbers show.

and also

In addition to mental issues, multiple combat tours have created more strains on joints, backs and legs, Pentagon statistics show. Medical visits for such problems rose from 2.8 million in 2005 to 3.7 million in 2009.

We might draw a cautionary lesson from this, I think: in the future, we should count all costs, not merely upfront costs, when considering going to war for less-than-urgent reasons. And not just the direct costs either — by allowing two hugely expensive wars to become our national priority for seven years, we lost opportunities — opportunities to deal with health care sooner, not to mention nipping the financial crisis in the bud. Taking both of those latter steps would have meant fewer retirees — not to mention semi-employed hobos like me — buying into Tricare instead of a crapped-out private plan.


Is there any good news? Well, sort of. The USA Today article was accompanied by a photo of Tammy Duckworth, a former helicopter pilot who lost her legs in Iraq and is now an Assistant Secretary for Public and Intergovernmental Affairs at the V.A.

Ms. Duckworth meeting with SGT Derick Hurt.

As you can see, Ms. Duckworth and SGT Hurt both have excellent prosthetics. It’s an old and tired cliche that wars improve our medical capabilities, but it’s true. Body armor has reduced combat deaths in Iraq,even from IED blasts, and so much of the medical expertise developed in the Iraq war is dedicated to the extremities — replacing arms and legs and even the complicated mechanics of hands and faces.

Here’s a “TED talk” by Dean Kamen, inventor of the Segway, about being asked by the DOD to develop robotic arms for wounded vets. (If you want to skip to the demonstration of the arm, it starts about 45 seconds from the end.)

America hasn’t always done its best by its vets, but one good thing about our ambivalence over these recent wars is that it has often translated into a serious solicitousness for the well-being of the common soldier; we are keenly aware of our prior history with war vets, and we are, this time, attempting to do right by those we send out into the world to do violence on our behalf.

I often argue on this blog that we ought to do right by everyone else who serves America, too: that we would be better served by providing good medical care to farmers and teachers and cops and entrepreneurs and baristas, as well. But our sentimental sense of duty toward our soldiers is a good start. So here’s to a future of truly amazing prosthetics, the development of which was paid for out of our tax dollars for the sake of a few, and which will incidentally come to benefit us all.


And now some music as we ponder our semi-robotized future:

welcome to the Ambassador Suite, sir

I’ve been wondering for some time now how much our insurance company would ultimately end up paying for our amazingly expensive birth. One of the weird things about the American insurance model is that nobody knows how much anything costs. When you go into a bookstore to buy a book — I mean, to the extent that people still do that — the price of the book is written on the cover. You look at the price, you agonize over it for a while, and if it’s an expensive book you look around to see if there are other, cheaper books you’d be just as happy with. But with health care, it’s not that way. You go to the doctor and you say, “How much for a check-up?” and they say, “Who’s your insurer?” Right away, you know something is wrong with a system like that.


Immigrants don’t screw around with this insurance crap. Elana had a minor dental emergency while we were traveling. Since we don’t have dental through Tricare, we had to find a cheap dentist we could pay out of pocket. Elana was casting around for ideas on how to find the least expensive dentist possible, and something from deep inside me — some source of wisdom to which I had not, hitherto, had conscious access — said, “Look for a Vietnamese dentist.”

And sure enough, we were able to find a Vietnamese dentist with a degree from a very respectable school who nonetheless catered to hardscrabble, uninsured immigrants. She understood our approach to dental care — seek it only in emergencies, and pay cash to fix only the immediate problem — perfectly. She did not try to upsell Elana on additional procedures. She did not try to make my wife feel bad for not seeking care sooner. She was willing to see us on short notice. And she had a set price list, which she knew by heart. Elana enjoyed this experience greatly — as much as anyone enjoys dental work — because it was clear, customer-oriented, and anxiety-reducing.


That’s the purely capitalist side of medical care. We also experienced the flip side while traveling. I was on active duty orders for a while, and so I was taken off of Tricare Reserve Select and put on what’s known as “Direct Care,” which means you’re required to seek care directly from the military health care system unless you’re too far from a Military Treatment Facility or you’re in danger of losing “life, limb, or eye.” I was never in danger of losing any of those things, but I did strain something while running, and while I thought it probably wasn’t a big deal, I wanted to get it checked out. When you’re in the Regular Army, you do this by visiting your unit’s aid station, but when I asked my First Sergeant what Reservists do, he was puzzled for a second and then said, “Go to the emergency room.”

This turned out be exactly right. The emergency room at the Madigan Army Medical Center also has an urgent care section which is open from 0500 to midnight, and they don’t really mind if your problem isn’t that urgent. If you’re willing to hang out for a couple of hours, a gruff but reassuring P.A. will examine you, explain that you don’t have a hernia and you just need to lay off it for a couple of weeks, and send you home with some overly effective painkillers. And that’s it. There’s no charge. It’s like Michael Moore and the Queen of England dreamed it up together:

You may not like socialized medicine — you may think it results in less innovation in the really important fields, like boner repair and mild sneeze reduction — but it shares one important attribute with the purely capitalist immigrant medical economy: when you go to the doctor, you know how much it costs.


Sadly, when I’m not on active duty orders, my wife and I use an insurance company like everybody else. Because our insurer, HealthNet Federal Services (aka Tricare), is carefully regulated (and heavily subsidized) by the government, it’s a sterling company that charges reasonable rates, does not ask you about your medical history before enrolling you, and actually pays out claims when you get sick. For all these reasons, I adore Tricare and would not change it for any other insurance plan. Nonetheless, like any insurer, it contributes to exactly the weird disconnect between consumer and price that causes market economics to fail in the health care system.

Consider Elana’s emergency room care and C-section. When we arrived at the emergency room, I was taken away from my seizing wife and led off to a little room to be interviewed about my health plan. The interviewer was very nice, though I can’t help thinking that having an RN ask me about my wife’s recent health might have been more useful at that point. But no, we talked about health plans and how difficult it was to do Tricare paperwork and where everybody’s insurance card was at the moment. They were, as I said, very nice. At no time did anyone actually mention money.

Elana and Henry were both in the hospital for many days after that. We concentrated on their care and recovery. At no time did anyone actually mention money.

Eventually Elana was well enough to check out, and I brought her home. At no time did anyone actually mention money.

Five days later, we got the thumbs-up from the neonatologist to bring H. home. It was a scary and momentous day. It was also the last time anyone at St. Joseph’s would have an opportunity to discuss the cost of care with us in person. They were very nice. At no time did anyone actually mention money.

The reason for this, I believe, is that they had no idea how much Elana’s care, or Henry’s care, actually cost. What happened next was this: the hospital submitted bills to Tricare for payment. But the amounts demanded on these bills bore no realistic resemblance to what Tricare is willing to pay for those services. The amounts are purely notional. They exist to satisfy some bookkeeping need, to fill a box on a spreadsheet somewhere. These amounts are not the amount anyone will actually pay.

Instead the way it works is this. The hospital says, “For an emergency room visit, a C-section and eleven days in the hospital, we charge, mmm, forty-five thousand dollars.” And the insurer says, “We’ll give you nine grand and this packet of circus peanuts.” And because the hospital wants the business of all the people who hold Tricare insurance, they agree to it.

But please keep in mind — $45,000 is a fictional number. It’s not even their retail price. It’s not like you can call up a hospital and say, “My wife would like to have the following procedures at your hospital — how much would it cost?” The answer, as always, will be “Who’s your insurer?” (And please don’t say you’re uninsured. That’s only going to make them feel embarrassed at having taken your call in the first place.)


After I convinced my wife to fly 3,000 miles with a three-month-old to come see me in Washington, she was adamant that we fly back on the same flight. Which turned out to be prescient, because mild fog and rain for some reason threw the Chicago-O’Hare Airport into complete freak-out mode, delaying every flight into the Windy City for at least 2-1/2 hours and causing us to miss our connecting flight, and as hard as that was, I think if either of us had had to make the trek alone with the baby it would have ended in tears and babbling.

If you were to guess that there aren’t that many flights from Chicago to Syracuse in the middle of the night on a Saturday, you’d be right, but we hustled down the concourse to the last one anyway, hoping to be put on standby. We looked up at the standby notices on the monitors. It was a grim picture — there were already 25 people on the list. But the gate agent refused to admit that we would never get on the flight because, he said, “It’s not first-come, first-served.”

“Oh,” I said. “What’s it based on?”

“It’s based on the price of your ticket and how many Frequent Flier Miles you have.”

My wife and I looked at him in Marxist disgust and stalked away in protest immediately after adding our names to the list. (Hey, you never know — the Army might have some massive bank of Frequent Flier Miles somewhere.)

We moved quickly back to the customer service counter, which was already swamped, though we would later turn around to see that we had just beaten the massive crush of grouchy, stranded travelers. After waiting in line for quite a while and displaying our beatific former lama of a son to a delighted Buddhist nun, we finally made it up to the counter, where a young lady whose last nerve had not yet been frayed endeavored mightily to help us.

“I’m sorry,” she said, looking sorry. “All the flights for tomorrow are booked up already. Is there anywhere else you can fly into? Maybe LaGuardia?”

LaGuardia is about five hours away from Syracuse.

She had a few other plans involving rental cars and trains and also one where we would just give up and rent an apartment in Wicker Park.

I was ready to buy into these elaborate schemes. But Elana kept politely insisting that we’d like to go home tomorrow. Eventually, backed into a corner, the ticket agent picked up a phone and called someone and supplicated for help and, magically, two tickets for a flight to Syracuse the next evening were made manifest. She thanked the person on the other end of the line, printed out boarding passes, and voila! problem solved. We praised her for her diligence and resourcefulness and went off to find a hotel.

As we were walking away, I expressed skeptical amazement that two seats had “suddenly” become available. Elana, who worked for several years as an assistant to various high-powered executives, rolled her eyes. “They always have seats available. They save them for when George Clooney from Up In The Air suddenly changes flights.”

That’s just how it is, man. There’s a club, and you’re not in it. That’s what makes this America.


I happen to think that’s fine, most of the time. Even when it’s causing me and my little family no end of hassle and exhaustion and non-frequent-flying airport shame, I don’t discount the value of a little class-based elitism. There are nice things in the world, and wanting to have them is a good goad to achievement.

But health care is different. It’s stupid and counterproductive to insist on people applying for elite club status in order to stay alive and healthy. Health is the real engine of a country’s economic growth, and it’s ridiculous to try to use it as an incentive to hard work, especially when it’s poor health that’s keeping someone from working hard. Yet health insurance in our country is the Frequent Flier club of social achievement. When you have it, doors open to you; a mysterious system of discounts and advocacy and personal care is made available to you; emergencies affect you less. Also, there’s a cocktail lounge.

I find this morally repugnant. But unfortunately, it’s more than that. This preposterous club system has taken over the economics of health care, corrupting it and leaching out of it all the vitality of capitalist endeavor without giving any of the security and stability of socialism. It’s a farce, and from now on I’m going to do my damnedest to stick to Vietnamese dentists and whatever “government takeover of health care” I can find.

why I am not a Republican

Hey, look — I’m basically a pretty conservative guy. I don’t like terrorists. I do like shooting guns, when I get the opportunity, and I would like to see a balanced budget and I basically want to be left alone and to leave others alone. Also, thinking about gay sex makes me sort of uncomfortable.

So when you factor in my maleness and my whiteness and my general level of economic frustration, I ought to be pretty much square in the middle of the Republican demographic. I ought to be, at the very least, a kind of sensible P.J. O’Rourke/David Brooks/George Will-style Republican. And yet somehow everything about the post-Gingrich Republican Party strikes me as ridiculous, clownish, disastrously unproductive, and harmful to our country.

Our two electoral parties don’t nearly do justice to the breadth and subtlety of political thought in our country, but they do offer, roughly, two competing stories about the world. In one story, life is a zero-sum game in which paying taxes merely impoverishes you without giving you anything in return, those who fail in the Holy Practice of Business should be punished by “the market,” and any form of collective action inevitably leads to collectivism. In the universe of this story, each of us must spend his every waking moment vigilant — vigilant! — against creeping socialism, terrorists, Mexicans and gay sex. But mostly creeping socialism.

This is where the rubber hits the road, because it’s the creeping socialism argument that screws everybody equally. When we remain Eternally Vigilant against socialism, we declare that we must all hang separately lest we all hang together; that only the cowardly and the weak would act other than in their own self-interest and only the depraved and the avaricious would countenance any modest sacrifice for the public good; that a sliver of safety for all must come at the cost of Forsteresque privation for one; that any admission of the role of chance and misfortune in human affairs necessarily degrades the roles of morality and individual effort; and that all suffering comes on two accounts — the providential hand of God, and the foolish attempts of government to thwart that hand.

In short, Republican ideology appeals to the part of us that is risk-averse. It appeals to the part of us that is small and afraid and wants to hoard everything and most of all wants to feel that there is some measure of control in the world. Republican conservatism offers a fiction that if you do the right things and don’t take chances and keep your head down, you will prosper. The corollary of that proposition, of course, is that in the natural order of things, you’re only poor, sick, or miserable because you deserve to be.

I think that’s why conservatism is often wrapped up in sexual anxiety — sex has the power to make us feel ashamed and uncertain and is that peculiar field in which we’re unusually subject to post hoc, ergo propter hoc fallacy: I had gay sex, so my mom died. And so whenever Americans forget to be afraid of economic failure, conservative rally-horns shrill about lesbian marriage and wanton abortion-seekers, because if you’re subject to shame in one arena you get used to being shamed out of better things in all arenas.


Now, the other story, the one told by Democrats, is far from perfect, and the tellers themselves are by and large useless. (Was there ever a more whey-faced, weak-kneed, wooden, uninspiring cartel to hold power in a great empire? Scott Brown is only the latest in a series of Republican mental vacancies to win on personality and the ability to say something, anything, in a simple sentence.) But the basic story is just this: life is unpredictable, so let’s look out for each other.

That’s it. That’s the whole difference, basically. Republican conservatives want to mitigate risk by circling the wagons and holding onto everything they’ve got for dear life and hoping that rain will fall only on the unjust. Democratic liberals, on the other hand, want to mitigate risk by sharing it. Are you afraid of falling ill, or being poor in your old age, or being unable to give your child a decent education? Liberals — or hell, let’s call them what they are, which is a very milquetoast form of socialist — liberals say, “Hmmm. Let’s see if we can create an orderly way of helping one another avoid those pitfalls.” Republican conservatives, on the other hand, offer you this advice: “Don’t trip.”


And that’s a perfectly legitimate approach to American life, I suppose; I’ve painted this in moralistic terms, but humaneness isn’t a condition of citizenship, and selfish, fearful, risk-averse bullies get up and salute the flag every morning just like the rest of us.

But economically, does the “every man for himself” philosophy make sense for America? Ayn Rand, patroness to a century’s worth of adolescent blowhards, lionized publishers and businessmen and… um… architects… and other hardy invidualists, without ever quite considering that a modest welfare state actually makes entrepreneurship more attractive. And by welfare state here, I don’t mean bread lines and five year plans for steel and badly made cars. I mean, you know, “We won’t let you die on the sidewalk.” And the simple truth is that a man who’s less afraid of dying like a bum on a ventilation grate is more willing to take the economic risks that starting a business, or even leaving your job for a better job, can entail.

I offer myself as a simple example. Because I’m in the Army Reserve, I have very cheap and nearly bulletproof health insurance. (It’s also subsidized by the taxpayer, so it’s, say, 60% socialist.) It’s portable and not at all dependent on my full-time employer. This offers me quite a bit of latitude. Chances are pretty good I’ll end up in some sort of government job, but it’s by no means certain. I could, if I wanted to, start a business (Elana and I often talk about our future web-consulting service, yourwebsitesucks.com.) Or — more likely thanks to that other great socialist victory, the G.I. Bill — I could go back to school and become a lawyer or an agronomist or finally study Arabic at an advanced level. I could develop skills that not only make me a better commodity on the job market but actually add to the total pool of intellectual capital our society has to draw on.

I can take any or all of these paths and ultimately contribute in my small way to the growth of our economy, rather than hunkering down into a dead-end job as an assistant manager at the Taco Bell, because I have cheap, portable health insurance provided by the government. I am a better asset to our great capitalist experiment because of a carefully targeted bit of socialism.

Republicans — at least the vocal ones — want to create an environment in which failure is brutally punished and no one ever takes risks because there’s no safety net. That’s great for large, oligopolistic corporations, who would like laborers to be cowed and willing to take half a loaf because they’re afraid of getting nothing at all, but I don’t think it’s good for innovation or entrepreneurship. If we create a society in which the cost for trying something new and untested is bankruptcy and ruin, what message are we sending to those whose as yet unexpressed genius ought to carry us into the future? How will we foster either labor or capital that can react quickly to changes in the global marketplace, if change is associated with risk and risk is associated with personal doom? Pure-market capitalists love to talk about the motivation that the reward of profit provides, but a hypothetical carrot will hardly overmatch the everpresent threat of a very real stick.

Constructing more and safer paths to success does not impoverish the roadbuilders, nor does it benefit only those who take those roads. Easy access to education and flexible and secure health care and pensions enable those with ability and drive to react to changes in the economic environment, to increase the overall number of business experiments from which we draw our few runaway successes, and therefore to ultimately build wealth for the whole society.

And that is why I am an economic conservative who is in favor of socialism.

Thousand dollar shots

I wrote this two weeks ago. You know what’s weird about having a baby? How your life becomes really fragmented. You get to do things in ten-minute increments, constantly on high alert in case somebody starts complaining loudly. So the measurements are out of date – we took H. for another doctor’s appointment more recently, and he was eight pounds, nine ounces. He probably weighs FORTY-TWO POUNDS by now or something. You should see his jowls. Sometimes I like to kind of tuck his chin into his chest, because I’m a jerk and it makes him look exactly like Winston Churchill.

Key quote: A man does what he must - in spite of personal consequences, in spite of obstacles and dangers and pressures - and that is the basis of all human morality.

Key quote: UNGH GAH! UNGH GAH! UNGH GAH!

But anyway. Here’s a somewhat-out-of-date tale of some stuff relating to our kid, Captain Jowly Gruntles of the RAF:

Henry is seven pounds, 11 ounces today. And he’s 20 inches long. And his head circumference is – I forget, but it’s some number that gets his head ON THE HEAD GROWTH CURVE. In fact, he’s now on the curve for everything: in the bottom 1% for weight and length for baby boys who are 1.6 months old, but in the 4th percentile for head circumference. So if he were in a room with 99 other babies, he could beat up three of them USING ONLY HIS HEAD.

We were at the pediatrician’s office yesterday morning. In addition to getting a set of measurements, we got our kid a shot of antibodies that will theoretically help him fight off Respiratory Syncytial Virus (RSV).

We had a hard time deciding to do this, deciding to agree with his doctor’s recommendation that he get these shots once a month for the duration of cold and flu season. And not because we’re Opposed To Vaccines. (For some stupid reason it is very important to me that everyone understand that I LOVE SCIENCE and do not believe that the MMR vaccine causes ASTHMAUTISM… parenthood is kind of a trip in terms of how it smashes your face into a whole bunch of your less-ignorable character flaws.) And not even because watching your seven pound, 11 ounce baby get a shot is kind of a horrifying experience. Although I freely admit that I am morally weak and it is a horrifying experience.

But because this shot is insanely expensive (and because the experience of being convinced to get it made me feel really bad about a lot of things relating to the American health care system, ahem.)

How expensive, you ask?

Well, of course nobody in the US can actually just say “This is how much Shot X costs”, because it depends on if you’re a sucker who’s paying cash, or if you have an insurance company (partially) footing the bill, and if so which insurance company – the cost of everything DEPENDS. So I couldn’t nail down exactly how much this shot costs. But it’s expensive, somewhere between $1000 and $3300 (the highest number for a cash-paying patient I saw On The Internet) per shot. And your baby gets one shot a month. For up to six months. So you can see how this could add up to quite a lot of money.

Henry’s pediatrician – who is so cool Seth and I wish we could hang out with him on a social basis… you know, maybe go see a movie or something – said of this drug that he recommended it for premature babies, but that it was crazy expensive and that most insurance companies refused to pay for it. And if ours, as he expected they would, refused to pay for it, he wouldn’t advise us to pay cash for it or anything. It wasn’t a disaster if we couldn’t get it, it was just some extra protection for a developing immune system during cold season.

So it was pretty clear that Dr. S- didn’t expect our insurance company to approve the drug. And Seth and I felt fine about that. Even before we got in the car and talked it over, I knew we felt fine about it. Guess how I knew! It was because when Dr. S- first said “This drug costs about a thousand dollars per shot”, Seth and I looked at each other and shared The Gaze Of Cheap/Bad Parents, where both of us were clearly going “HAHAHAHAHAHA” in our heads.

But then Dr. S-‘s biller started calling us. “I’m still working on getting that approval!” she’d say. And we’d go “…oh.” because we had expected our sensible military insurance company to immediately shut this nonsense down, possibly by sending our kid a letter reading “TOUGHEN UP, BUTTERCUP”.

In the meantime, we started Googling this drug and this disease (I know! You should never do this. Who among us hasn’t decided that he or she has a terminal case of TOE CANCER after some late-night Googling?), and discovered the following:

  • Different medical groups have different ways of deciding if this drug is appropriate, but generally, it’s recommended for premature babies during cold and flu season, but only if the babies have one or more added risk factors in addition to being premature. Such as “lungs are not so great” and “lives with a bunch of other babies who bring home illnesses a lot”.
  • RSV is not that big of a deal for the vast majority of people, something akin to a cold. But it can be bad for little babies and end up giving them permanent lung issues. Like wheeziness.
  • The drug doesn’t actually keep your baby from getting RSV. It just tends to make the course of the illness less awful.
  • Bearing in mind our layperson’s ability to read study extracts, it seemed to be the case that this drug did not actually reduce mortality – reduce the number of babies dying from this virus – it just reduced the number of hospitalizations.
  • The drug is super-expensive. HAD I MENTIONED THAT?
  • Most parents of babies, premature or otherwise at elevated risk for this disease, were desperate to get their hands on this drug. They lobbied their doctors, they lobbied their insurance companies, they lobbied their state legislators to make it available, they paid outrageous co-pays gladly, they went into debt to pay for the whole course of shots themselves. Cash. Because their insurance companies said no dice. But apparently, the drug company was sometimes willing to help desperate parents arrange financing. How nice of them.

After some debate, we pretty much decided that this drug wasn’t for us. Henry was premature, but he’s really healthy (yes, I knock wood, typing this) and he doesn’t have any lung issues. And it’s not like he hangs out with a bunch of other babies at baby nightclubs snorting lines of baby coke and compromising the integrity of his airways. It was hard to see how you could justify the cost in his case. We were pretty sure that our insurance company was going to deny the request, which was PERFECT, because then we wouldn’t have to seem like bad, unfeeling parents and actually reject the drug ourselves.

AND THEN THE PEDIACTRICIAN’S BILLER CALLED AND SAID WE HAD BEEN APPROVED, dangit.

And then, when we didn’t immediately schedule the appointment to get the shot, the company that makes the drug started calling us. Was I Henry’s mother? Was I aware that this wonderful drug had been approved for his use? DID I WANT TO SCHEDULE THE APPOINTMENT IMMEDIATELY? I DID, RIGHT?

It was a hard sell in the vein of talking to a car salesman. It was really bizarre.

Also the company sent us a “starter kit” in the mail. Which was a sales flyer talking about how terrible it would be to HAVE YOUR BABY DIE BECAUSE YOU DIDN’T GIVE IT THIS MIRACLE DRUG.

Finally, cementing my “this is so totally creepy” feeling, the car/drug salesman, when attempting to lock me into a six-shot course for the rest of the winter, told me: “And your co-pay is zero dollars! So it’s free!”

Now, okay, getting really outraged in a moral-high-horse way over that probably means I need to take a meditation class.

But even so, it’s kind of weird. There not being a co-pay doesn’t mean that it’s free. It’s just free to me, the end user. But you know who pays for it? Everyone else in the risk pool. That’s how insurance works. And in the case of our insurance, although we pay into a pot for it, it’s also underwritten by you, THE AMERICAN TAXPAYER. So no. It’s not “free”.

And also, just to get this out of the way, it makes me have COMMUNIST EMOTIONS to think about how this super-expensive drug is available to only some babies, basically at the whim of their parents’ insurer, and it’s available at vastly differing prices, and some parents can get it and some parents can’t, and some parents go into debt for it and some parents don’t have to because it’s “free”.

All of that strikes me as basically not okay.

But. In the end, we got him the shots. Seth got on the phone with Dr. S, who proved his awesomeness by understanding our ambivalence and saying “Would it be better to use this money to get 800 kids a polio vaccine? I don’t know. Maybe.”

Also, Seth pointed out that at this point H. has cost our sensible military insurance company quite a bit of money, so they probably would rather pay for ridiculous shots now than risk a hospital stay later.

Also, Seth’s sensible doctor sister said we should probably do it.

So we did, but I still don’t know if that was the best choice or not: Making medical decisions for someone else is much harder than I would have guessed. And I feel much less qualified to do it than my know-it-all personality might lead you to believe. I keep wanting the answers to be starkly black and white, and I guess they never are, they’re always going to be vague and best-guess-y and sometimes they will involve someone sticking a needle in your baby’s thigh when he’s not paying attention, leading to a serious case of the UNGH GAHs.

Maybe “coded” means, like, “ordered lunch in”.

As you may have gathered, they let me leave the hospital! I was super-gleeful about this, because HOSPITALS ARE TERRIBLE (don’t get me wrong, if you need your life saved, they will take care of that for you. But they are also sort of unpleasant places where doctors wake you up at 6:45 AM to tell you complicated things about the HOLE THEY PUT IN YOUR THROAT and how OH YEAH THEY MIGHT HAVE DESTROYED YOUR ABILITY TO SPEAK.) but then I started to realize that leaving the hospital has as its main downside that you expect to be Significantly Better and like Able To Go Shopping or whatever, when really at first you need 18 hours of sleep a day.

(Still better than being in the hospital, though.)

At this point, I am mostly all better: they took out the valve in my throat, and my voice came back, so I will just have a cool scar to freak people out with (after the hole closes up. YES! I still have a small hole in my throat. Jealous?) And they put me on medication for a while to make sure I don’t have any further bizarro incidents where my blood pressure becomes 900/500 or what have you… And antibiotics so I don’t get MRSA and die (I imagine.)

So ignoring minor issues like near-constant exhaustion and this thing where my memory suddenly doesn’t work (which better be because of the exhaustion and not because I blew a fuse in my brain, you guys!), I am pretty much back to normal. Aside from how I now have this baby.

***

When I first woke up, the day after The Dramatic Incident, I remembered essentially nothing*. So as I slowly regained consciousness, nurses and doctors would come in and talk to me and as hours passed, I slowly gathered the following: these people seemed to think that I was married and had been pregnant and had almost died and had just had a baby.

HOLY SHIT WHAT THE FUCK?!?

I did not believe any of this.

You guys! It was like one of those ’60s paranoid conspiracy thrillers, where a guy wakes up in an apartment he doesn’t remember and has a wife he doesn’t remember and then eventually it turns out that it’s all a ploy by the Russians to get the nuclear football or something. And exactly like that guy, the longer it went on, the more I started to doubt EVERYTHING IN THE WORLD.

The basic timeline is something like so: I woke up doped to the eyeballs on painkillers and sedatives, people implied that I had a kid, and then crammed me into a wheelchair and took me up a bunch of floors to see some tiny person who evidently lived full-time in an EZ-Bake oven.

“Here’s your son! Isn’t he beautiful?”

Riiiiiiiiiight.

I THINK I WOULD REMEMBER IF I HAD BEEN PREGNANT, LADY. NICE TRY.

Later, when Seth made his illegal foray into checking out the folder of records the NICU staff were keeping on us, the notation for my first visit was:

MOTHER HAS FLAT AFFECT.

This was pretty much the one thing about the hospital that actively pissed me off. Flat affect! Are you kidding? I was stoned out of my gourd, remembered nothing, and was UNABLE TO TALK. BECAUSE OF THE TUBE IN MY THROAT. That wasn’t “flat affect”, that was “skepticism”.

Grumble.

(The NICU nurses were actually really outstanding specimens of humanity. It was just that one thing that made me cranky. No wonder they won’t let parents look at their records.)

***

Seth has mentioned previously that hospitals are not necessarily as organized with the imparting of information about your care as you might think. I guess, insofar as I had ever thought about this stuff, I imagined that if you were in the hospital for something life-threatening and you were totally out of it, doctors would probably wait for your husband to be around before discussing complicated health stuff with you. (Particularly if you couldn’t talk to ask them questions.)

Not so! The doctor who crammed the tube through my throat, for instance (PS, I first met this guy in the ICU, and for quite some time I thought maybe he was someone I was hallucinating and had cobbled together from from The Simpsons characters.) liked to walk in at 6:22 AM and say things like “So we’re not totally sure your voice is going to come back! {jargonjargonjargonjargon} Some other doctor is going to {jargonjargonjargon}, okay? How’re you feeling? Good, good. All right, see you later! Oh, hey- don’t forget to {jargonjargon something really complicated involving breathing}.”

THEY WERE ALL LIKE THIS. I kind of thought that leaving the hospital would mean the end of this nonsense, but NO:

Today we took Henry (who has been allowed to come home from the hospital – Seth will probably update you on that later when we are no longer sobbing with exhaustion**… or I guess if you’re a parent yourself you can just think back to the early days and laugh at us for being SUCKERS.) to the pediatrician for the first time.

(He is totally fine and healthy and gets excellently angry when nurses try to take his pants off: OUTRAGE! VENGEANCE WILL BE HIS. But that’s not what this story is about. Sorry, baby-oglers.)

The pediatrician had one of those electronic readers she used to flip through our various hospital records. She said things like “Wow! What a dramatic experience!” and Seth and I nodded politely: we have figured out over the past few weeks that having full-blown, no-warning eclampsia makes you the obstetrics version of reality-tv-show-“famous”.

And then she tapped a new section of the screen and said, in awesome deadpan:

“Huh. So you coded on the table?”

And I said “I’m sorry?” and looked at Seth – you know, just in case he had been Keeping Things From Me – and he was shaking his head, “No, I don’t think so–”

And the doctor said, firmly and just ever-so-slightly dismissively – BE QUIET CIVILIANS, DO YOU THINK I DON’T KNOW HOW TO READ A MEDICAL RECORD OR SOMETHING?!? WHO’S THE EXPERT HERE? – “Yep, that’s what it says, all right. Coded on the table. Phew! What an ordeal, huh?”

You would think – or I would have thought – that this is something that maybe someone would have mentioned to me! BUT NO.

(???)

Of course I also recently discovered that the reason my midsection is crazy sore is not because I am having EXPLODING SPLEEN SYNDROME but instead because the two surgeons who saved me and my kid used that area to rest their heavier instruments while they were working. So I am starting to think that my standards for how doctors communicate is based on the wrong TV shows – E.R. instead of, say, Scrubs.

*You know… except for how I suddenly had all this insight into the true nature of reality and the universe and our immortal souls, etc. Which I guess is kind of par for the course if you CODE ON THE TABLE.

**I realized that I really needed to take a freaking nap and calm down when I found myself almost-tearfully wanting to argue with Facebook. My husband had updated his FB status to indicate that he had kicked me out of the bedroom to go sleep in the TV room for a few hours (he initially kicked me out onto the couch… but I could still hear the existence of other people from the couch, so I couldn’t sleep, because WHAT IF THE BABY WERE CHOKING OR BEING ABDUCTED BY ALIENS). And instead of just going “Yep. My husband is a pretty cool guy.” I started to get argumentative and upset because he said that I had had FIVE hours of sleep, when I was pretty sure it was no more than THREE.

Not-sleeping! It’s terrible and turns you into a loon.

when you don’t know the rules

A couple of days ago we went to visit our son. Elana has been out of the hospital for a few days and seems to be getting markedly better each day. But Henry, who’s somewhat wee and premature, is sticking around there for a while, so we go to visit him every day for a feeding or sometimes two, and for quality snuggling and play time. Well, the playing is mostly on our part — it usually consists of waving his little hands and feet back and forth and kissing his warm little forehead. He accepts all this without comment. Usually with his eyes closed. I suspect him of sleeping, in fact.


We went to visit our son. We arrived early for his midafternoon feeding; the nurse was out and he wasn’t really awake yet, so we sat down for a few minutes near his crib (well, you know — plastic box) to wait. I spied the big blue binder containing his medical records on the counter, and we decided to have a look.

Why we did this, I can’t say, exactly. Maybe because we’re both big science nerds, but neither of us is an actual scientist, so for us numbers on graph paper still have tremendous novelty and appeal. Maybe because we’re both so brain-befogged about what exactly happened those first few days (Elana having been heavily drugged, and I having been a trembling mass of worry-jelly) that it’s comforting to think someone was taking notes. Or maybe it’s because we’re new, clueless parents, and it’s a large book about our kid.

Anyway, we started reading about our kid, but we quickly realized that almost half the book is actually about us. When your kid is in the NICU, apparently, each day’s report about him is accompanied by a report about the parents — did they visit, did they handle him appropriately, do they know the head-end from the diaper end, and so on. Fairly harmless, I suppose, and I don’t really care, though it is a little odd to realize that there’s an official record of your behavior somewhere that you weren’t aware of.

And maybe you’re not supposed to become aware of it, because after about ten minutes the nurse appeared at my side and, before she even introduced herself, scooped up the book out of my hands and explained very firmly that they don’t like parents reading the medical records, because in the past parents have “misunderstood things they read” and then been upset with the nurses, and the nurses didn’t know why. “If you want to look at the records, we can have a doctor sit down with you and go over it.”

I fixed her with my what-the-hell-are-you-talking-about stare and didn’t say anything — a tactic that sometimes works with gatekeepers — so she repeated the whole speech again. My libertarian INFORMATION WANTS TO BE FREE!!! tendencies were starting to kick in, and I briefly wondered if I should argue the point with her. But my wife, who’s a good deal smarter than I am, had already figured out what was important here, and she gave me the eye. So when the nurse asked, “Okay?” I let it go, with a grumbly, “No, but that’s all right.”

What Elana had already figured out was that in a situation where people have your baby and are taking notes about your behavior, there is no good outcome to fighting them on principle.


My wife is basically a saint. I say this partly because she already wrote embarrassingly nice things about me and I’m pretty sure I should have been the first one to do it, seeing as how she was in the hospital and all, so I’m kind of already behind on my wife-praising duties. (Gentlemen, a hint: when your wife almost dies bringing your child into the world, you should strive to say something about her that’s at least as nice as this, and really maybe something more like this. Yeah.)

But I also say it because all while she was in the hospital she was unbelievably calm and cheerful and kind to the nurses and blissfully willing to let them do all kinds of invasive and unpleasant things — even the one woman she dubbed The Midnight Phlebotomist. She would sit in bed and happily talk about what she had learned from nearly dying, which was that a lot of the stuff we think is important isn’t, really, and that she thought she might lighten up about things a bit. And then they would stick tubes down her throat and ask her questions.

Elana in the hospital.


Nonetheless, even my wife sometimes runs afoul of the unwritten Hospital Code. That same day a nurse asked us if we wanted to sign the release for Henry to have the hepatitis B vaccine.

“Oh,” said Elana. “I thought he got that at 2 months.”

“Well, the policy in New York is that he gets one shot now and then a series starting at two months.”

“A series of three?”

“Yes.”

“For a total of four.”

“Yes.”

“I don’t understand. I tested negative for hepatitis B. Is he likely to get the virus from some other source in the next two months?”

The pediatrician, who was standing nearby examining Henry, jumped in. “It’s just an extra protection starting at birth. Just in case.”

“In case he’s an IV drug user on the side,” I joked.

“No.”

“Okay,” continued Elana, trying to figure it all out, “I just thought the recommended course was three doses.”

The pediatrician and the nurse shared a look. Which was followed by a weird, elaborate bit of performance in which the nurse assured Elana that OF COURSE you don’t HAVE TO sign it if you’re not comfortable, and WHY DON’T YOU TAKE A PAMPHLET, while Elana tried desperately to convey that WE ARE NOT ANTI-VAXERS!!! WE LIKE SCIENCE AND HERD IMMUNITY AND NPR!!! REALLY!!! WE’RE DESPERATE FOR HIM TO HAVE HIS DIP-TETS!!!

That’s probably going in our Permanent Record, though. Parents hesitant about hepatitis B vaccine. Possibly hate child and America and everything good?


Then yesterday it happened again. The nurse practitioner came in and told us, seemingly out of the blue, “Today we’re starting Henry on iron.”

“Oh, why?” said my wife. “Is he anemic?”

Now, there is a perfectly good reason they wanted to give our son iron. I will withhold that information at this juncture to create Dramatic Tension. But I would like to point out that an explanation, any explanation, would have been okay with us. She could even have lied and said, “Yes, he is anemic. Nothing to worry about, though — we’ll have him chew tenpenny nails for a couple of days and he’ll be right as rain.”

But instead she smiled in a sort of puzzled, puzzling way and said, “It’s just something we like to do.”

“Because he’s preemie?” I asked.

“Yes, because he’s preemie.”

“So… do you mix it in his milk?” asked Elana.

Another weird smile.

“Or do you… give it to him with a dropper or something?” I said.

“There’s a syringe,” she said vaguely.

“But do you give it to him… orally?” Elana asked.

“Yes… orally.” It was like talking to a zombi.

That led, somehow, to a discussion of the Human Milk Fortifier that they’ve been mixing into his mother’s breast milk for their bottle feedings. Which is fine by us, but somehow by the end of the conversation the NP was telling us that Elana, who already breastfeeds Henry during the day and is planning on doing so exclusively once he comes home, would need to pump three bottles a day so that we could add a special fortifying formula to it. “It gives him 22, 23 additional calories. Plus… some other stuff.”

“Really?” said Elana. “How long will I need to do that?”

“We would probably recommend fortification for the first nine months.”

My wife sagged a little. “Nine months?”

“Yes.”

“Are you sure? Because the pumping is difficult and painful, and also we would have to pay for the pump.”

“Oh yes. Nine months. But on the bright side, Dad could do some feedings, too!”

I thought I’d try a different approach. “The formula adds 23 calories?”

“Mmm…. 22… or….”

“How many calories a day will he get from breastfeeding?”

Amazingly, she looked at me like I was a complete moron. “Well, we can’t really measure that.”

“Well, okay…. But how many calories would you like him to get? What’s the average you’re expecting, if he feeds 8 times a day?”

“Well, we’d like to see about… 120 calories per kilo.”

Elana and I did some back-of-the-envelope calculations. “He’s a little over two kilos. So that’s about 250 calories per day. So you want to increase his calorie intake by about 10%…?” I hazarded. “Is that the goal?”

She looked at us funny again.


Of course, sometimes it’s not you who bumbles into a faux pas in the hospital.

We were hanging out in the nursery with our kid, and my wife was pumping breast milk. She jokes sometimes that she is The Human Dairy, and I can only imagine how weird it is to sit around with your boobs hanging out of your shirt and weird air-horn looking things hanging off your nipples. In fact, it’s got to be far worse, in that sense, than breastfeeding, because when you’re breastfeeding you have a baby covering your breast (and usually it’s only one breast), and also because people tend to think nice things about breastfeeding mothers.

That you might be feeding God, for example.

Whereas having the pumps on seems to leave you much more exposed and also sort of makes you look like you could be in some sort of Children of Men/Handmaid’s Tale dystopia. Or a New Zealand political campaign.

Anyway, it’s sort of a private thing.

So we were sitting next to the boy’s crib, and Elana was pumping away on a machine one of the nurses had thoughtfully brought in for her, when the social worker yanked open the curtain and enthusiastically charged in: “Did you get this pamphlet on Baby Care? It’s really great! It tells you everything you need to — ”

She stopped and stared straight at my wife’s breasts, at the airhorns, at the pump going wonk-wonk-wonk-wonk in the corner.

“I’m sorry,” she said. “This is probably a bad time…?”

Elana allowed as how it was as little awkward. The social worker put the pamphlet over her face and started backing away.


Hospitals are uncomfortable places. They combine several different hierarchies (between doctors and patients, doctors and nurses, and different kinds of doctors) with the appalling forced intimacy of discussing private and/or terrifying things with strangers. No wonder doctors always look like they’re ready to be somewhere else.

So it can be hard to have normal conversations with people. But every now and then you find someone who’s actually able to talk to you like a peer. Sometimes, they assume your level of understanding to be somewhat greater than it actually is, as with the hilarious-yet-humorless ENT who examined my wife’s vocal cords and would say amazing things while feeding a tube down Elana’s nose. Things like, “This will feel about the same as last time until I reach the pharynx” and “What I’m looking for is any edema in the sub-glottic area.”

But sometimes you really hit that sweet spot with a medical professional and they’re able to explain things to you in clear English without dumbing down the science too much and without giving the impression that You Are Asking About The Forbidden Knowledge. These people should be given medals and heaps of cash.

Today while we were feeding Henry a different nurse practitioner came in and talked to us for about twenty minutes. By the end we about wanted to kiss her feet. Between our conversation with her and a phone call to my sister, who is a pediatrician, we came away with a pretty comprehensive understanding of all the stuff that had caused us confusion in the previous two days.

For the benefit of any new parents of preemies who may someday stumble onto this blog, here is the concise skinny on what preterm infants need, from Catherine The Excellent NP and My Sister, M.D.:

Hepatitis B: The hepatitis B vaccine is, indeed, administered in 3 doses. They like to do the first one at birth now because there have been a lot of problems with moms infecting their babies with the virus. If your child gets the first installment in the hospital, then they give him the other two doses in his first two “combination” shots at two months and four months, and then a different combination vaccine without the hep B at six months. If your pediatrician doesn’t happen to have a combo vaccine without hep B, that’s okay — a fourth dose at six months won’t hurt him.

If he doesn’t get the first dose at the hospital, then he gets it (bundled with a bunch of other vaccines) at two months, then another round at four months and another at six.

So, to sum up, three is standard, four is fine, and they do it at birth now just to be on the safe side.

Iron and the Joe Weider Baby Weight Gain Formula: In the third trimester of development, the baby socks away stores of iron and fat and other nutrients. Sort of builds it up like a savings account. If he’s a preemie, of course, he’s had less time to store up all those extra resources. So they want to stuff him full of them shortly after birth so he’ll be up to par.

Iron is particularly important, because there’s simply not enough of it in human milk to meet the baby’s needs as he builds blood volume. So if he doesn’t store up a six-month reserve in the third trimester (and our little guy was at least a month early), some fairly bad things can happen, including neurological impairment that can’t necessarily be reversed later. (Check out this surprisingly readable paper on the subject from the Canadian Medical Association Journal.)

That does NOT mean you have to keep pumping breast milk for nine months, mixing fortifier into it. If your baby is a good breastfeeder right away, he may never need the extra calories. And if your pediatrician recommends, for example, iron, you can buy an iron supplement separately and feed it to him with a dropper. (Though my sister says the babies hate it — it’s apparently pretty nasty-tasting.) OR, if he does need the additional calories because he’s not gaining weight fast enough, you can feed him the special preemie formula straight once a day in a bottle. To repeat, you do not have to pump extra milk for 9 months. Just in case anyone tries to tell you you do.


Tomorrow we may be bringing Henry home. He had a moment the other day where he forgot to breathe for a few seconds while he was sleeping, so they’re debating whether to send him home with a monitor. That’s a subject for another post, but for now let me just say that I think they should send him home with an actual human monitor, preferably somebody with a badge and a hat and a whistle, someone who will watch us and let us know when we’re screwing things up. You know: putting a hat on his elbow, or investing his college money in newspaper stock.

Except that’s not really true. The truth is that I’m tired of having experts tell me how to manage my baby. Even the experts who saved the lives of two out of the three members of our nascent family are beginning to grate on me.

I don’t have any sense that because I contributed some DNA to this kid that I have magical insight or wisdom into how to care for him. But at a certain point, he’s in our care. There’s nothing they can do about it if I want to feed him entirely on Froot Loops or keep him up all night playing Monopoly, a game which he will only dimly understand because he’s five and he’s never used money, and which anyway is epically tedious with just two players, but we’re going to finish it, dammit!

Ultimately this little guy is dependent on us for everything, practically forever. The neonatologists and the NICU nurses are using all their expertise to give him every possible advantage heading out into life, but eventually, they’re handing him into the care of a couple of morans. It’s like hearing the massive soundscapes of Pink Floyd being piped in as background music in the Wal-Mart: it would have been better for such astonishing artistry never to have existed than to put it to such a trivial, compromised use. I want to tell them, You’re delivering us the Bugatti of babies. But we’re just going to let homeless people live in it for six months and then drunkenly back it into a lake one night!

Well, anyway, that’s how it seems. Perhaps we’ll surprise ourselves. Or get really, really lucky.

Off to bed — tomorrow is (or is not, depending on some test results) the big day!