Friday, March 8, 2013

A Tale of Two Babies

A tale today of two babies, one who found life instead the life-long specter of death and one who died instead of facing long decades of life, and some thoughts about how to interpret the data without losing faith in the reasonableness of the universe…and of faith itself.

The baby who died, but should have lived, we surely all know about. Nathan and Raizy Glauber, both twenty-one years old, were in a livery cab on their way from their home in Williamsburg to a nearby hospital because Raizy, seven months pregnant with their first child, was not feeling quite right. It ought to have been nothing at all—a quick midnight visit to the hospital, a doctor either reassuring them that nothing serious was wrong or reassuring them that whatever was wrong could be dealt with adequately and safely, a leisurely return trip home, a relieved effort to salvage what was left of a night’s sleep.  But instead of any of that actually happening, a BMW barreling down Kent Street at about sixty miles per hour—twice the legal speed limit—broadsided the cab at the intersection of Kent and William Street. The cab driver survived. The other driver fled on foot. Nathan was taken to Beth Israel, but pronounced dead on arrival.  Raizy was taken to Bellvue where, although police say that she too was pronounced dead on arrival, her baby was nonetheless delivered successfully. A miracle! But not one of too long duration when, after living for a day, the child could live no longer and joined his parents in the World of Truth. May their memories be a blessing for their families and their friends, and for us all, and may they all rest in peace.

I suppose you could argue that the story shouldn’t constitute any sort of complication to the faith of the faithful. Aren’t there automobile accidents every day, including some that cause fatalities to wholly innocent people? Don’t babies die all the time after suffering terrible traumatic injuries? Don’t children? The answers to these questions are obvious, obviously. And yet…when the baby has a name, and when his parents have names and predecease him by a single day—and do so by dying senselessly, pointlessly, and needlessly in an accident that could just as easily not have happened—then the story of a family that died for no discernible reason other than because some maniac was speeding down a city street in the middle of the night and lost control of his vehicle somehow steps outside the rubric of “this happens all the time” and becomes an issue for people whose faith rests on the presumption of the universe being possessed of order and equity.  The driver of the BMW, a local man with a record of drunk driving, has now turned himself in. Details will emerge as the story unfolds further. But no verdict, and no prison sentence, will bring the dead back to life.

The baby who lived but could just as easily have spent a lifetime facing down death also has a name, but it hasn’t been released to the public. Nor has even the baby’s gender been specified. But with or without a public identity, his or her story is amazing. The child was born in rural Mississippi to a mother infected with the HI virus in the fall of 2010. The mother, who had received no medical attention at all during her pregnancy, was unaware that she was infected and had obviously received no treatment of any sort. But because tests during labor suggested that she might have been infected in utero, the baby—at the age of thirty hours—was transferred to the University of Mississippi Medical Center in Jackson, where Dr. Hannah Gay departed from standard practice to order a three-drug regimen intended not merely as prophylaxis on the chance the baby might have been infected but instead as actual treatment based on her reading of the baby’s test numbers to indicate that the baby actually was infected. As a result, the baby’s virus levels were reduced to the level of undetectability even before a full month had passed. The treatments continued until the baby was eighteen month old and the baby’s virus level remained at zero. That much was not unexpected, but then the mother stopped bringing the child to the clinic and only chose to return five months later. Dr. Gay says now that she expected the baby’s virus levels to be high after so prolonged a period of non-treatment, but—to her amazement—the baby’s levels were still undetectable. In laymen’s terms, the baby had been cured.

Not content with her own results, Dr. Gay engaged the help of a team of medical researchers at the University of Massachusetts who put the baby through more sophisticated tests that yielded the result that the virus was indeed still present in the baby’s body—or, more precisely, that viral genetic material (whatever that exactly is) was present—but that no evidence was found of any virus that was able to replicate, which would be the way that the virus would make someone sick with AIDS. Nor, even more surprisingly, was any virus capable of replicating found in any of the so-called traditional reservoirs within the body in which such viral material often hide, almost as though it were trying to avoid detection by the physician/sleuths seeking to find it and run it permanently out of town.

Now, of course, begins the real debate surrounding the crucial question of whether the baby was “really” cured. Some question whether the baby truly was infected in the first place. Others wonder if we might simply not yet have tests sophisticated enough to detect viral material hiding in every conceivable nook and cranny in which it might plausibly be hiding out. Still others have raised questions about the details of the mother’s medical history, or about the baby’s. I personally lack the background or training meaningfully to comment on any of these issues…but even the strong possibility that for the very first time a baby born infected with a terrible virus capable of leading to terrible consequences appears to have been cured through the aggressive use of drugs that, at least provisionally, appear totally to have eradicated the virus and made the baby not infected but fully well—that seems like an amazing accomplishment that the world should surely celebrate.

I am old enough—more than old enough, actually—to remember when HIV infection was a death sentence. Today, through medical advances unimaginable even twenty years ago, AIDS is a manageable, if miserable, disease that many people live with and only some die of.  It’s true that this development in Mississippi does not have any clear implications for adult carriers of the HIV, but the very fact that, apparently for the first time, a baby was cured by having the virus not contained or controlled, but actually eradicated—that surely sounds like a milestone worth celebrating. (There has been, so far, one single adult deemed fully “cured” of the virus, the man at first only known as the Berlin Patient and then later identified as a man originally from California living in Germany whose treatment was based on stem-cell transplantation.) But even if the baby’s story has no direct implications for adult patients, it’s still a huge step forward in understanding how to treat, at least, babies born infected with HIV, of which the United Nations estimates there were 300,000 born in 2011, the most recent year for which data is available. There are, by all accounts, more than three million children in the world living with HIV.

Reading these two stories against each other is the kind of stress-inducing experience most people who seek solace in faith try to avoid. One baby should be doomed to living with the viral equivalent of the sword of Damocles hanging over its head if it somehow fails to stick to its regimen of medication for the rest of its life, yet somehow comes in contact with the one doctor in the universe willing to try a kind of therapy not usually given to babies in this one’s situation…and ends up cured. No virus. No sword. No lifetime of worry or viral anxiety, just clear sailing into a future unclouded by the fear of AIDS.  Another baby is on its way to being born into a warm, loving family constituted, just so far, of two happy, healthy newlyweds. It seems destined to grow up in a tight-knit, close community of people who cherish their children and who, even if they dress peculiarly and seem to the rest of us to be a bit excessively insular in terms of their relationship with the outside world, are still normal enough Jewish people to understand that the future will eventually rest in the hands of the children we are educating and raising today. And then, out of the blue, the universe turns on a dime…and that baby goes within the course of a few hours from being a fetus safely developing in its mother’s womb to being an orphan, then a patient, then a victim.

The easy explanation—facile, yet very appealing—is that we simply can’t stand far enough back to see the whole picture. According to this soothing interpretation, there is always justice, always a divine plan, always a point to what happens in the world. We just can’t always know it. We lack God’s understanding of the interconnectedness of all events, of all things, of all people. We lack the insight necessary to understand how justice works in its ultimate sense. We cannot peer beyond the veil into the next world…which natural limitation creates in many of us a sense that there is no justice in the world, but which really only means that we cannot fathom how justice truly works because our human condition almost requires that we only see part of the picture and not ever all of it.

I wonder if anyone has ever found that a comforting set of thoughts. I once did, or at least I thought I did. But I’m long past finding it possible to wave away the injustice of the world with a consoling reference to my own inability to understand how things truly are. I suppose there is a certain arrogance embedded in that thought, but there it is: I want the world to be a just place in which God occasionally alters the plan to save doomed children without ever altering the course of human events to permit a child to die who deserved (as do all children) to live into adulthood and to thrive in the bosom of a loving family.  But what I want isn’t always what I get. Nor is it what any of us gets.

There is a built-in fragility to the world, a kind of delicate balance between alternate destinies that each of us negotiates in the course of the years and decades—or hours—of our lifetimes. Contrary to what we all wish were to be the case, the future really is a blank slate waiting for words to be written on it. Mostly, it is we who write those words. But they are also written now and then by others, including by others whom we don’t know and never meet. All life is interconnected—that much really is true, I think—but the fact is that we all live our lives at the confluence of potentiality, probability, plausibility, happenstance, good and less good fortune, and the guiding hand of a God Who set the world in motion, then left it to spin along without feeling the need, apparently, to micromanage the daily affairs of its inhabitants. The good news is that we are ennobled by the freedom of choice that God has granted us. The bad news is that we live in a world in which, occasionally, very bad things happen to good people, even to newborn innocents.

The correct response, therefore, is neither rage nor blasphemy, but humility in the face of an ever-spinning world that takes us along for the ride until we ride no more. We are neither masters of the universe ourselves nor marionettes who only think of themselves as free men and women. We are fragile, breakable things holding on for as long as we can, players in a play featuring more improvisation than fixed lines. We are, all of us, creatures who spend lifetimes careening between the fantasy of control and the fantasy of being fully out of control. What the contemplation of these two stories suggests to me, then, is one deep and unsettling truth: that among the tools that the Creator uses to rule over creation, nothing is more capable of discouraging arrogance than the randomness of destiny that somehow co-exists with divine justice in a world that logically should feature one or the other…but in which traces of both are somehow nonetheless fully perceptible.

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