A Normal Pregnancy Is a Retrospective Diagnosis

The names in this article have been changed to protect the privacy of all individuals involved.

If every medical specialty has its homily for indoctrinating new members, “a normal pregnancy is a retrospective diagnosis” is the cynical soundbite for obstetrics. It is a patronizing and alarmist statement, meant to distance weary practitioners, terrify patients, silence objections from families, and establish the first defensive perimeter in the legal fortress that defines obstetrical practice in the US.

It is also the perfect, if inadvertent expression of how little obstetricians really know – and how limited the specialty is in its ability to test and expand that knowledge – thanks in part to the visceral fear inspired in patients by statements like “a normal pregnancy is a retrospective diagnosis.”

This homily serves as the opening taunt to one of the more quietly rebellious obstetrician/gynecologists (OB/GYNs) in my new book, Catching Babies. For reasons I’ll explain momentarily, the book began as an expose of the practice of high-risk obstetrics, but it quickly morphed into a novel, an ensemble drama about the brutalization of OB/GYNs during their residency training.

But tonight, none of that matters. Tonight, life is imitating art; nothing from my years of research on the subject is comforting or even interesting; and I want to cringe every time one of the Kaiser people asks this nervous, expectant uncle if he is “the one who wrote the book about us.”

As I hole up on the labor “deck” with worried expectant parents and juggle emails and callbacks from OB/GYN and certified nurse-midwife (CNM) friends around the country, the horrible truism about the medical mysteries that can hijack a “normal pregnancy” – often with devastating capriciousness and cruelty – loses the last of its intellectual and literary charm. This is not a cool case in my new book; this is my family.

Hannah’s growth has stalled in the final month of her pregnancy, and she has actually lost a small amount of weight. And even though ultrasound and all available tests indicate no other problems with what, at 39 weeks, is no longer a fetus but a baby boy with an emotionally charged family name, the protocols at Kaiser call for immediate admission and an induction of labor. There could be a problem with the placenta or umbilical cord, and “Baby Sam” – as we started calling him months ago – might be slowly starving. Or he might just be small. As the homily from internal medicine would have it, Baby Sam has a classic case of “GOK,” or “God Only Knows.”

Which is why I am frantically calling around the country for help, before Hannah gives the final go-ahead for the induction. “GOK” rankles and infuriates me, even if it is honest, even if it is not gussied up for our side of the medical curtain like “idiopathic” – a term meant to sound clinically authoritative by physicians who would rather not admit in plain English that they are clueless about what is happening with a patient, i.e., that they have been reduced by the case, literally, to idiots. But not knowing anything about Baby Sam’s status – other than he sits at the 7th percentile for fetal weight, he is still active, and his heart rate is normal – is especially frustrating, given the freefall Hannah is about to take into the world of cascade birth interventions and potential complications.

My first callback is from Meg, a CNM with 30 years’ experience delivering babies and training other midwives.  “She is right on the edge,” Meg says. “She really could go either way. I would not induce her. I’d have her stop all activity, monitor her closely, and let her deliver naturally.”

A few minutes after we hang up, I get a callback from Tom, Meg’s colleague, also a friend, and a professor of high-risk obstetrics at one of the most celebrated academic medical centers in the country.

“She is right on the edge,” Tom agrees.  “At 39 weeks and 7th percentile, she could go either way. Could be serious IUGR [intrauterine growth restriction] or nothing. And the risks of waiting, though they’re extremely remote, are developmental delay and retardation. I’d go ahead and induce and deliver her.”

Wonderful. IUGR. Developmental delay and retardation. Not an option. I already know what Hannah and her husband are going to do; extremely remote is not remote enough.

An induction, on the other hand, does not guarantee a good outcome either – and it is fraught with the potential for bad outcomes that are not all that remote. An induction, or the forcing of labor with drugs and procedures, often triggers downstream interventions, most notably emergency c-sections, which are already done with hair-trigger frequency throughout the US obstetrical care system; these in turn lead to numerous other complications, including the need for more interventions and c-sections in subsequent pregnancies. The blessing and the curse of modern medicine, from the NICU to the oncology unit, is its ability to stimulate its own demand, and obstetrical practice is the quintessence of this cost-curve-sustaining paradox.

The specter of these interventions – inflated by expectant families’ primordial fear of arbitrary physical harm to their babies and providers’ primordial fear of arbitrary legal harm to their careers – has instituted a permanent game of chicken between pregnant women and the medical establishment. In obstetrics, “defensive medicine” is not just assumed, but actively evoked as part of a normative explanation for medical decisions. I have heard the phrase “we have to do this to cover ourselves legally” uttered to patients with such frequency, it has gone from appallingly crass, to admirably candid, to nearly superfluous.

Whether or not this does explain every dysfunction in obstetrical care, as many would have us believe, medicine does not get any more defensive that this: the inexorable increase in birth interventions has driven a growing number of women away from the medical establishment, off the grid, to home births attended by “lay” or unlicensed midwives. It has spawned a cottage industry of “alternative birthing” activists. And it has inspired language no less ugly than terms like “birth rape” (seriously – Google it) to describe what many view as a mangling of womens’ bodies against their will by OB/GYNs held hostage by lawyers who do not ambulance-chase malpractice so much as hearse-chase mal-outcomes – many of which are the fault not of any doctor, but of nature, God, or bad luck, depending on your beliefs.

Not that a purely defensive induction of Hannah’s pregnancy would protect anyone at Kaiser from a lawsuit. Tom tells me that as an expert witness he has seen perfect replications of her case present twice and go perfectly wrong in both directions: one patient chose to wait, the baby was disabled, and the family sued and won; the other patient chose to induce, ran the gauntlet of severe birth-related complications, and the family sued – and also won. As anyone who has ever had the pleasure of litigation will tell you, its outcomes have more to do with a gothic mix of technical arcana and emotion than anything resembling fairness or truth.  And that is before parading dead or disabled children and devastated families in front of juries without medical training.

The Womb is Not a Study Site

During the long night before Hannah’s actual induction begins, I talk with two more friends, a teaching OB/GYN in Denver and a lay-midwife in rural Oregon. Guess how they vote? The OB/GYN agrees with Tom and recommends, reluctantly, that Hannah go ahead with the induction; the midwife of course recommends getting her and Baby Sam the hell out of the hospital.

“IUGR, placental disorder, developmental delay and retardation,” I remind the midwife. “This is not a family of gamblers.” Like a growing number of women, Hannah has been wanting as natural a childbirth as possible, inside the traditional birthing system. But “7th percentile” sounds tiny, puny, scary; maybe not for weight distribution among a sample packed as tightly as near-term babies, and definitely not to somebody who understands biostatistics and just wrote a book on this very subject; but it sounds terrifyingly small and vulnerable to people who want and expect a healthy baby.

More pacing on the labor deck. What to do, who knows? Perfectly consistent with the absence of definitive data and driven, like patients, by their own temperaments, values and biases, my OB friends say intervene and my midwife friends say do not intervene. So is this a normal pregnancy? Or a family heartbreak in slow motion?? Can’t we have our retrospective diagnosis now???

The smart-ass answer to this entire problem – the one I might give on a panel at a health care conference – is that we need to study the problem. We could settle this matter within months with a clinical trial: randomly assign 500 women who present with late-term stalled fetal growth to induction versus no induction, stratify by number of weeks of pregnancy and fetal weight, and see what happens.

What would happen, of course, is nothing. No expectant mothers would sign up for the trial, for fear of relinquishing control to randomness; and an absence of subjects would not matter because no hospital’s Institutional Review Board (IRB) would sign up to host the research. I imagine the only folks really interested in seeing anyone undertake such a study would be the plaintiff’s bar, who would line up and count off by ones-and-twos to represent the “victims” on either side of it. But even if, through the twin miracles of fundamental malpractice reform (meaning profound process reform, not just economic futzing) and an emboldened medical research bureaucracy, the study were initiated, it would quickly be terminated for ethical reasons. Many expectant mothers would suffer mildly or moderately bad outcomes, and a small number of babies would suffer catastrophic outcomes – something society could no more countenance than my family could for Baby Sam.

Which makes Hannah’s situation not only vexing, but a post-modern American medical classic: what is best for Hannah and Baby Sam, absent the retrospective diagnosis we desperately wish we had, is not what would be best for the overall population. The situation is even more complex when you factor in potential divergences between the needs of an expectant mother and her near-term baby – where the mostly male politicians start showing up with their mouths open – but we have enough to worry about tonight. For us, right now, Baby Sam comes first; he is Hannah’s baby, not everybody else’s data point. The nominal risks associated with an induction are minuscule compared with the remote but catastrophic risks associated with fetal distress, developmental delay, or the word Tom spared me on the phone but we both know is relevant to IUGR, the one word I dare not utter in Hannah’s labor and delivery room: “stillbirth.”

The induction process begins in the morning.  The Kaiser care team gives Hannah the drug CYTOTEC (misoprostol) – the drug used in conjunction with the politically incendiary medication, RU-486, or “abortion pill” – hoping this will ripen her cervix and stimulate labor.

Several hours of waiting, worrying, praying, and staring at the fetal heart rate and uterine pressure monitors, and nothing. Hannah’s care team escalates to intravenous injections of PITOCIN (oxytocin).  In clinical shorthand, they are “pitting” her – a weirdly apt way to describe throwing one’s body somewhere it does not want to go on its own.

The day wears on, turns into evening, then another day. Hannah’s labor does not progress. She is starting to weary of the process, and she’s hungry; they have put her on a restrictive diet, of course, assuming she will soon go into labor and deliver. When her blood sugar starts dropping, they let her go back on solid food.  Her energy picks up, enough to start arguing that maybe she should just go home and wait.  “Maybe this is a sign that Sam is fine,” she says, “and
he just doesn’t want to be born yet.”

The Kaiser people get wind of our conversation when they walk in to check her IV, and send in the CNM who has just begun her shift.

She runs through the same argument that had brought Hannah in two days earlier.

This time, Hannah argues back.

“Do you know what could happen, if you wait?” the CNM finally says with an impatient sigh. “Your baby – he could be – stillborn.”

The ugly stench of the word fills the chlorine air of the delivery room, where it hovers, like a dead infant in a shroud, for all of us to behold.

“It’s actually time,” the CNM adds, “to move things along and break your water.”

There is no argument from Hannah or anyone else.

The next stop on the standard tour of birth interventions is the rupturing of Hannah’s membranes, or the amniotic sac that holds and protects Baby Sam. This would be the point of no return, an irreversible procedure that could well result in a massive infection if it did not work in short order, thus guaranteeing the necessity of a c-section.

Why did all of this suddenly feel like a runaway train? It would be causally accurate and certainly easy to blame the American legal system for the collision in our nation’s delivery rooms between what patients want and what protocols demand. But our tort system, with its stupefying processes and swarm of venomous creatures, is not the root cause of the problem.  Rather, it is a symptom of our own denial, of Americans’ entrenched cultural inability – shared by this author – to accept life on its own occasionally heart-shattering terms. Our medical malpractice system, like much of the post-modern American health care system itself, is a house of broken mirrors for our own worst neuroses as a society; and a big part of these neuroses includes our pathologizing of childbirth, along with our pathologizing of shyness, baldness, the normal effects of aging, dry eyes, twitchy legs, and whatever other little misery we can figure out how to medicate next.

As Americans, we seem hellbent on controlling the uncontrollable; this is why we create so many breathtaking medical technologies and give the world almost all of its breakthroughs in the treatment of cancer, heart disease and other real diseases.  But it is also why we grind up tens of billions of health care dollars every year overtesting, overreacting, and overtreating; why we look for someone with deep pockets to blame when things go wrong anyway; and why we demand and expect to get retribution when nature wants – to add insult to our injury – simply to take its own difficult course.

Every Baby Tells a Story

In the hours I have to sit around the labor deck thinking back on every detail of Hannah’s pregnancy, I realize that perhaps none of this would have happened if she had not been overtested and overtreated in the first place. When her blood sugars started coming back just on the high side – based on a crude test known to generate suspicious results – her care team put her on a highly restrictive diet to prevent gestational diabetes. Gestational diabetes, after all, would result in too large a fetus. That intervention certainly worked.

What else would anyone do for their own baby? For every argument for and against Hannah’s dietary reaction, once again the fear of a remote catastrophic outcome outweighed the more likely mildly bad outcomes. These choices are not really rational or irrational, so much as they are differently rational; they are the human calculus of fear and dread winning out over skepticism. From the oversized pre-natal ultrasound clinic at one end of the hospital to the oversized ICU at the other end, patients and their families are driven not by reason, but by faith, fear, guilt, anger, entitlement, and nothing less than what they perceive as the rockbottom meaning of life. And God help anyone who tries to stand in their way, as the hysteria about “death panels” during the health reform debate made garishly clear. With childbirth, all of these forces go into overdrive.

Hannah’s husband and I pace the labor deck.  He reminds me that she is carrying the hopes of an entire family. Baby Sam will be the first child in a new generation, and because of that, he has been tagged by name with nothing less than the legacy of a recently deceased uncle who survived the concentration camps and walked from Poland to Israel. Against a landscape of hope that dramatic – and for every family, the landscape is that dramatic – it is difficult if not impossible for anyone to think clearly about imperfectly informed medical choices: not the mother, nor the family, nor anyone on a jury.

This is why Catching Babies morphed, almost against my own will, into a novel. In my earlier work about the economic and political conflicts that define the delivery of health care in the US, I kept noticing that the greatest variations in care – and deepest cultural angst and antagonisms – seemed always to be associated with women’s health: our grossly disproportionate misdiagnosis and undertreatment of heart disease in women; our obsession with breast cancer when lung cancer is far deadlier and far more preventable; the almost criminal variations in hysterectomy rates around the country; the uninformed, blanket imposition of one group’s religious values on all women’s reproductive decisions. What started out as an analysis of the health policy problems unique to obstetric medicine quickly escalated into outright drama, if only because nowhere else in our health care system have I found the needs and obsessions of individual providers on such a direct collision course with the needs and obsessions of patients.

Like Hannah, we all dream of perfect pregnancies and perfect babies, as if they were natural rights. This happy baby dream can be punctured, often in a few messy, terrifying moments, by the harsh and merciless realities of the working OB/GYN’s world – a world shaped by an OB/GYN resident’s disproportionate exposure not to happy baby dreams, but to disaster pregnancies among the poorest, unhealthiest, least insured, most vulnerable women in society. The specialty has learned to cope, barely, by muttering homilies about retrospective diagnoses; by learning to hate lawyers like they learn to hate cancer; and by hoping for the best (maybe) but always assuming the worst – and treating accordingly. Without sleep, without data, one patient at a time. Who would not find great drama in a medical culture so doomed and dysfunctional, and so utterly driven by the conflict between patient preference and provider prejudice.

But tonight, as I go back to pacing the labor deck alone, none of that matters. And then, a terrible thought: is this somehow my fault?  I’ve spent the past two days in Hannah’s room and the waiting room, exchanging emails about publishing details for Catching Babies. The idea of some perversely cosmic connection sounds totally absurd of course, more than a bit self-aggrandizing, maybe even paranoid. But it is perfectly consistent with the belief, held only half-jokingly by many otherwise perfectly rational OB/GYNs I know, in the existence of  “Call-Gods” – mischievous personal deities who preside over pregnancies on nights when they are on call at home or in the hospital, starving for sleep. But this teleology would not sound all that absurd to a billion or so Hindus, many of whom are just as rational and science-minded as a physician awakened to another precipitous delivery at 3 AM, ten minutes after finally falling asleep.

Breaking Hannah’s water finally works. The artificially induced contractions are severe, throwing her from the bed. The pain is too intense, and Hannah finally relents and agrees to an epidural, which will numb her from the midsection down and cut her off from the core sensations of the birthing process. It is the next car on the runaway train of interventions, and she did not want this one either, but the pain from the induced contractions are overwhelming.

Three hours of pushing later, and Baby Sam is born. He is perfect and pink and healthy.

It had been a normal pregnancy.

J.D. Kleinke is a medical economist, author, and health information industry pioneer.  He has helped create four health care information organizations; served on several public and privately-held health care information company boards; and written about health care business and policy for The Wall Street Journal. The names in this article have been changed to protect the privacy of all individuals involved.

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