LINDAL. LAYNE
Department of Science and Technology Studies
Rensselaer Polytechnic Institute
“HOW’S
the Baby Doing?’’ Struggling with
Narratives of Progress in a Neonatal
Intensive Care Unit
In this at once biographical and autobiographical piece (cf. Shapiro
1988),I describe the processes of “knowledge-making of one neonatal
intensive care parent. In particular, I investigate the ways that narratives
of linear progress informed my efforts to understand my son’s condition
andfuture prospects, that is, to engage in lay prognostication. In examining and comparing the three metaphors most commonly used to describe
my son’s changing conditiowoller coaster, graduation, and c o u r s d
explore how the discrepancy between narratives of linear progress and
the complex and volatile condition of many premature andlor critically ill
babies is discursivelymanaged in a neonatal intensive care unit. [neonatal
intensive care, narratives of linear progress, prognostication, clinical
course, knowledge production]
”
First-Person Accounts in Medical Anthropology and Science and
Technology Studies: A Note on Method
A
ccording to the editor of Medical Anthropology Quarterly (MAQ). this is
the first time a first-person account has appeared in this journal. Because
of the “uniqueness” of my approach I have been asked by the MAQ editor
and guest editor to discuss my “methodology” and to describe how my work fits
into the intersectionof Medical Anthropology and Science and Technology Studies.
First, let me say how surprised I am to learn that first person-narratives are
new to MAQ given the importance of this approach in anthropology and multidisciplinary feminist work since the 1980s (Behar 1993; Personal Narratives Group
1989; Reinharz 1992).’ In anthropologythe move to explicitly and self-consciously
place the author in our texts*came in conjunction with a new focus on the textual
production of ethnography (Behar and Gordan 1995; Clifford and Marcus 1986;
Geertz 1988; Mascia-Lees et al. 1989) and reevaluation of the anthropological
Medical Anthropology Quarterly 10(4):624-656. Copyright (Q 1996 American Anthropological Association.
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enterprise in a postcolonial world (Altorki and El-Solh 1988; Asad 1973; Marcus
and Fischer 1986).
In anthropology, and more broadly in qualitative research, it has become
widely accepted that “all texts are personal statements” (Lincoln and Denzin
1994578). At the same time, it is widely acknowledged that “culture speaks itself‘
through an individual’s story (Reissman 1993:5), and this is equally true whether
or not the story is that of the author. In literary studies these two views are reflected
in the Freudian belief that all writing is biographical and in the poststructuralist
position, which “deauthorizes texts, claiming that the grammatical, narrative, and
rhetorical structures in texts exceed, in their meaning-delivering effects, any
intentional structure the writer may wish or try to impose” (Shapiro 198860).
Together these views have blurred the boundary between biography and autobiography? In anthropology, our own version of these two understandingshas led to a
number of new ways of handling what Geertz (1988) has called “the signature”
dilemma in ethnography.‘ First-person accounts, like the one that follows are one
option for dealing with this issue.
That other such texts have not appeared in MAQ is particularly surprising
given the increasing prominence of the study of narrative in social scientific and
humanistic study of medicine over the past 20 years (Kleinman 1988): In addition
to the work of medical anthropologists, which has tended to focus on patients’
narrativizing (e.g., Becker 1993 on chronic illness; Jackson 1995 on pain; Sandelowski 1993 and Becker 1994 on infertility), humanists like Katheryn Montgomery
Hunter (1991) and Suzanne Poirier et al. (1992) have studied narratives of biomedical practice by examining the narrative genres employed by physicians and other
medical personnel (e.g., “chart talk,” “case presentations,”“anecdotes,”“syndrome
letters”).
Despite the substantialattention given to narratives and illness, there has been
relatively little written, in either the first or third person, on the narrativizing of
patient’s families? The discourses of physicians and patients are either treated
separately,or when the subject of study is doctorlpatient communication (or more
commonly miscommunication), the doctor/patient relationship is typically imagined as dyadic (cf. Fischer 1988). This makes sense given our cultural predilection
to think of matters of the body, including illness, as pertaining to individuals rather
than larger social collectives,’ and this accounts in large measure for the relative
dearth of anthropologicalattention that has been paid to patient’s families and other
concerned onlookers. The families of patients figure most prominently in cases at
either end of life, when the patient is deemed incapable of making informed
decisions? and the focus of the social scientific literature has been primarily on
“decision making” rather than “meaning making.’*
Thankfully, my husband and I were never forced to make a decision about the
continuation or termination of care for our son Jasper, although at one point his
condition seemed so dire that we did begin that torturous process. If things had
turned out differently, this account probably also would have focused on decision
making. As it is, my parent’s-eye view focuses on one layperson’s making sense
of the complex and ever-changingcondition of a critically ill infant.I0
But my account is not simply a pathography (i.e., a first person account of an
encounter with illness [Hawkins 19931). It differs from the pathographiesHawkins
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studied (1993) in that, despite my obvious closeness, the tools of anthropology
allow me to tack back and forth between the “experience-near” and “experiencedistant” (Geertz 1983:57).” “People use experience-nearconcepts spontaneously,
unself-consciously, as it were colloquially; they do not except fleetingly and on
occasion, recognize that there are any ‘concepts’ involved at all” (Geertz 198358).
This essay is organized around three of the concepts that shaped my experience and
that I employed in crafting my version of Jasper’s story. Using Jasper’s hospitalization as a classic anthropological “revelatory incident” (Femandez 1986:ix), my
approach focuses on what these three tropes “do” in this context.
My personal account is also explicitly situated in the context of multiple social
worlds (i.e., I understand my story as one of many stories that were simultaneously
being constructedabout Jasper by other socially situatedactors). Although my piece
is primarily my own, that is, “a family member’s story,” and thus on the lay side
of the conventional lay/biomedical discourse divide, it is also an attempt to
simultaneously study the narrative practices of the biomedical personnel involved.
In the multidisciplinary literature on narrative and medicine, the very real differences between patients’ narratives and biomedical narratives have been accentuated. While noting such differences, my piece also illuminates some of the ways
that these narrative accounts are similar: both draw on prevailing culturewide
narrative preferences and resources.
In terms of “verisimilitude” (one of the “solutions” to the “crisis of legitimation” in “postmodern/poststructuralist” texts identified by Lincoln and Denzin
[ 1994579-5801). many of the ethnographic details of my account, including the
use of the roller coaster, graduation, and course metaphors, are referred to though
not theorized in other descriptions of neonatal intensive care unit (NICU) life. I
mention these ‘‘findings” in the notes section.
“But what,” I am asked, “do you gain by introducing myself into the text as
an engaged participant?” “How does your personal stance shape the account you
are presenting?’ Geertz wrote of classic ethnography, “The ethnographer does not
.perceive what his informants perceive. What he perceives, and that uncertainly
enough, is what they perceive ‘with’ or by means of’ (Geertz 1983:58). When
personal experience is anthropologically informed, one both perceives and perceives at least some portion of that with which one perceives.
Clearly in a piece such as this, I acknowledge myself as a positioned subject,
recognizing that “the notion of position . . . refers to how life experiences both
enable and inhibit particular kinds of insight” (Rosaldo, quoted in Landsman
1994 12). I obviously cannot and would not assume to represent all NICU parents
(cf. personal communication, Joaquim Pinheiro, 1995).There is a high correlation
between prematurity and poverty (and the obstetrically relevant concomitants of
poverty such as lack of prenatal care, teen pregnancy, poor nutrition, drug and
alcohol abuse, exposure to environmental toxins). As a result, poor women are
disproportionately represented in NICU contexts. In addition, given the association
in our country between poverty and minority ethnicity, women of color are also
disproportionately represented. Do the culturally dominant narratives of linear
progress inform the experience of these women, and if so, do they inform the
experience of these women to the same extent or in the same way that they did
mine? These are fascinating empirical questions that invite future research. Even
..
“HOW’S THE BABYDOING?”
627
among middle-class North American women one would expect variation. The type
and severity of the medical problems, length of stay in the NICU, and previous
reproductive experiences among other things might well affect the type of story
told.
Nor is my account likely to be the same as that which might be told about
Jasper by an emotionally distant layperson. For example, Koenig asks in particular
about my depiction of “a happy ending”: “Would the ending be the same, or at least
your interpretation of it, if you weren’t so emotionally/personallyinvested in this
particular topic?” The answer is both yes and no, for my husband and I were not
the only ones who deemed Jasper’s journey through the NICU a success. From the
point of view of biomedicine, our story is a biomedical triumph. Without biomedical intervention both Jasper and I would most probably have died. It is individual
lives like ours that, when aggregated, account for improvements in the nation’s
maternal and neonatal mortality rates (Wall 1995). Furthermore, given the wide
range of disabilities that a grade 4 bleed may entail, the fact that Jasper is so little
affected, that he can lead a “normal life,” unquestionably constitutes for the
biomedical personnel who were involved in his care “a happy ending.” It is for this
reason that we have been encouraged to bring Jasper to visit the unit to serve as a
morale booster for the staff. But of course, the doctors and nurses who cared for
Jasper are also “emotionally/personally invested” in Jasper, though in different
ways and for different reasons. But Koenig is right; others might cast his story in
a less positive light. Given the social stigma attached to difference (Fine and Asch
1988; Goffman 1963; Moms 1991) and the mandate to produce “perfect babies”
(Landsman 1994; Wertz 1995). not to mention the mandate to have a personally
fulfilling birth experience (Gotleib 1995),emotionally uninvested members of the
lay public may well deem the ending of this story to be less than happy.
In terms of science and technology studies, this article is in keeping with one
of the important anthropological contributions to the field-that of studying not
only the production of technoscientific knowledge by experts but the processes by
which technoscientificknowledge is also made (or remade) by others (Downey et
al. 1995; Hess 1992, 1993; Hess and Layne 1992). This signals the anthropologically motivated trend in Science Technological Studies (STS) to move out of the
laboratory and to situate our studies of technoscience in larger sociocultural
contexts. Martin’s research on the immune system in an immunology lab, clinical
HIV settings, AIDS activist volunteer organizations, urban neighborhoods, and
corporate work places (1994b). and Rapp’s (1994a, 1994b) study of the ways that
amniocentesisis constructeddeployedinterpretedby a wide variety of social actors
in seven different sites, are exemplary in this regard.I2
Unlike Rapp’s work, my piece does not focus on a single technology, and
although set in the context of one highly specializedtechnoscientificsystem, much
of what I describe in the NICU is relevant in other biomedical settings and beyond
the clinic as well. Thus my essay focuseson the rhizome-like nature (Martin 1994a)
of narratives of linear progress.” This case study illuminateshow these fundamental genres“rebound time and again”(Deleuze, quoted in Martin 1994a:10)and link,
though in “discontinuous,fractured and non-linear” ways, “science and the rest of
culture” (Martin 1994a:10).
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It is also an example of the “profoundly (and tantalizing) elusive stance” on
which Martin suggests a cultural anthropological study of Western science must
depend (1994a:3).“This stance would entail one of those impossible conundrums
like trying to push a bus in which you are riding (an image from Berger and
Luckman), or trying to see, like the fish in Marx’s example, the invisible water in
which one swims.” In other words the problems that confront us when we try to
study science are the very ones that confront a person who writes an anthropological
first-person narrative (whether or not the subject of that narrative is technoscience).
This said, why is it that this is the first time that MAQ has published such a
piece? And why is it that first-person accounts are similarly rare in STS? It may be
that some of the reasons for feminist anthropologistspurportedly being slower to
experiment in innovative textual forms (cf. Abu Lughod 1990; Behar and Gordan
1995; Bell 1993; Mascia-Lees et al. 1989; Mountford, in press) apply to the lack
of first-person accounts in medical anthropology as well. For instance, it may be
that there are a host of “innovative” texts in medical anthropology that do not count,
at least to those who are doing the counting. This may be because they are written
by people on the margins of anthropology, or if written by securely positioned
anthropologists,they may be shunted into less prestigious publications like popular
magazines or the kinds of texts that are “assigned to introductory anthropology
students to whet their appetite” (Behar 1995:18). Or perhaps the relative dearth of
first-person accounts in medical anthropology has to do with the fact that many
medical anthropologists, like their STS counterparts, study up. Even when they
don’t “study up” they may “write up” if their intended audience includesclinicians.
In considering the relative dearth of experimental forms in STS, Hess observes that
experimentaltechniques in ethnographymight “only further confirm natural scientists’ suspicions that what we do is ‘flaky,’ ‘soft,’ ‘ideological,’and in the end, not
really science” (Hess 1992:13). He attributes the absence of first-person accounts
in STS to the “still strong social control mechanisms that punish such writing
conventions as ‘unscientific’*’ ( 1 992:17).
According to Hess, anthropologists have also used first-person narratives
“sparingly” because of “the dangers of self-indulgence” (1992:17). Although he
deems “alternative, nonreifying ways of thinking and writing about science, technology, and society” desirable,he is ultimately uncomfortable with the first-person
narrative genre and cautions against “letting loose a first-person narrator who may
slide all-too-easily from the reflexive ‘dialoguer’ into a heroic protagonist or
antiheroic confessionalist” (199413). It is important to recall, however, that the
“confessionalist”label is one that has often been assigned to feminist writing. Bell
has remarked upon “the tendency to associate engagement with the feminine, and
the feminine with the emotional,” noting that “regardlessof its rigor and innovative
nature,” feminist ethnographicinnovationsare “treated as a special case, and placed
within the genre of ‘confessional literature,’ or simply labeled ‘self-indulgent’’*
(Bell 1993:3).
When I wrote this essay, I did not stop to think about my method. I simply
wrote-writing and rewriting the story in my head as it emerged that summer, then
once Jasper was safely home, putting it down on paper and shortly thereafter, with
little (some might say inadequate) forethought,“performing” it at the anthropology
meetings. Now, in order to get it published, I am forced to be reflexive. Like the
“HOW’S THE BABY DOING?
629
bare-breasted woman clutching the pencil in the drawing by Fundora described by
Behar, I must be conscious of the eyes at my back and ask “how ‘the discipline’
will view the writing. Will it be seen as
too feminine?
too risky?
not
serious enough?” (Behar 19952). As Jackson observed, “the value and place of
different discursive styles have to be decided by the situation we find ourselves in
and the problems we address” (quoted in Abu-Lughod 1993:7).It is for the reader
to judge whether the discursive style of this essay is appropriate for the task.
.. .
. ..
. ..
“HOW’Sthe Baby Doing?’’
“How’s the baby doing?” This is the question that I struggled to answer for
myself and concerned friends and colleaguesduring the seven weeks in which my
son Jasper remained in NICU following his birth on June 8, 1993, at 30 weeks
gestation. In the process I became intrigued by the difficulty of answering this
question. Despite and because of the types and quantity of information being
gathered/produced about my son’s condition in the NICU, for many weeks I found
it nearly impossible to answer the ever-present, seemingly simple, and supremely
pressing question, “Is he getting better or worse?” In particular, I found that the
narratives of linear progress that I brought to the experience,and that informed the
questions of concerned onlookers, were repeatedly challenged.
Narratives of linear progress permeate our everyday lives. Cultural historian
Lynn White Jr. has observed how “[o]ur daily habits of action. are dominated
by an implicit [and White would say, uniquely Judeo-Christian] faith in perpetual
progress” (White 1967346).14Newman (1988:8) has also remarked upon this
cultural propensity-“from our earliest beginnings we have cultivated a national
faith in progress and achievement”
A central aspect of this faith stems from our ideas about the nature of
technology. One of our central beliefs about technology is that it “advances” in a
linear fashion according to “an inherently dynamic and cumulative process” (Volti
1988:7).Winner describes the pervasiveness in our society of the belief that “with
the coming of Newtonian science and the industrial revolution, a pattern of linear
growth was established that continues to the present day” (1977:47).IsA related
and normally unexamined belief is that “technological progress” improves our
lives. Rarely do we stop and seriously consider whether “our impressive scientific
and technical powers produce a world genuinely superior to that which came
before” (Winner 1986172).16
The “meliorist myth” (Fussell 1975) of unending technoscientific progress is
particularly evident in the realm of biomedicine. In the 1970s a noted philosopher
of medicine asserted that “[nlo disorder,however complex or intractable,is beyond
the possibility of conquest. Man’s Promethean hope of removing the restraints of
disease on history seem less illusory than ever before” (Pellegrino 1976245). and,
by and large, this notion still prevails. Despite recent public criticism of the
costlinessof medical care, the increasing dehumanizationof patients, and problems
of equity, few would doubt that “medical technology will make possible ever-earlier diagnoses of killer diseases and provide sufficient back-up spare parts to extend
progressively and perhaps indefinitely the population’s life expectancy” (Stell
quoted in Bronzino et al. 1990:519; cf. Poirier et al. 1992:1619).’’
..
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This vision of the triumphant march of medical progress is especially clear in
“frontier” fields like neonatal medicine. Sociologistsof neonatology Guillemin and
Holmstrom have remarked upon the “conviction” of practitioners in the field “that
[its methods] are constantly improving” (Guillemin et al. 1986:26).
Over the last twenty years, the adaptation of many adult therapies to the treatment
of full-term infants has been successful. The presumption in neonatology is that
progress will continue undiminished at the same rate and prove as equal to the
challenge of saving very low birth weight neonates as it has to saving more
developed newborns. [Guillemin and Holmstrom 198626, emphasis mine]’*
Similarly, in their book Born Early, Avery and Litwack discuss the “greatly
improved (and ever-improving)outlook for normal development” of premies and
their expectation that “ever more effective drugs” will be found through clinical
trials (1983:3 1, emphasis mine).
This narrative of linear progress about the field as a whole is replicated in
practitioners’expectationsabout how patients should respond to their interventions
and care. For instance, one example of a linear model of patient progress in an NICU
is found in the description by an attending physician of the process of decision
making at admission, “once a baby is on track, then the care is relatively easy. The
hardest thing is to decide which track the baby should be [on]” (Guillemin and
Holmstrom 1986:1 15).
According to Guillemin and Holmstrom (1986 113), “The ideal trajectory of
a cure [in a NICU]is a straight line of progress that a patient traverses q~ickly.”’~At
their study site “a full 60 percent of the cases admitted and treated. . .approximated
this patient model.” Those that did not (e.g., long-term cases and those that died
right away) were considered “problem cases.” The problem with long-term patients
is that they “progress so slowly . . .they seem not to progress at all.” For those who
die shortly after being admitted, “the career as a patient never really begins”
(Guillemin and Holmstrom 1986113-1 14).20In both cases this “violates the staff’s
. .. sense of the appropriate schedule of illness and cure” (Guillemin and Holmstrom 1986:1 14).2’
Both of these instances of NICU linear narratives influenced my lay perceptions about Jasper’s chances and what I could reasonably expect him to do. I half
expected things to go terribly wrong given the fact that I had suffered repeated
pregnancy losses prior to this pregnancy and had womed constantly throughout the
pregnancy that one disaster or another would strike. Nevertheless, since Jasper was
relatively “large,” “mature,” and “healthy” in comparison with other babies admitted to the unit, and given my understanding that he was “in good hands”and “getting
the best possible care,” I expected him to make steady progress and that I would
be able to bring him home after a reasonable period of time.
The two interrelated linear narratives of NICU progress (of the field and of
the “career” of the typical NICU patient) were reinforced by narrativesof fetaYchild
development that now form a mainstay of middle-class Americans’ experience of
pregnancy and parenthood. The ideas about individual development, how a person’s life should progress, apparent in these books reflect ideas that middle-class
Americans share about life more broadly. Becker found in her study of mostly
white, middle-class infertile couples that people believed “that their lives should
follow predictable, coherent, linear paths” (1994390). Newman’s (1988) study of
“How’s THEBABYDOING?”
631
unemployed white- and blue-collar workers also illuminates how deeply held and
widely shared these beliefs are and makes additionally clear the fact that this linear
trajectory should be upward. Early childhood presents a concentrated, telescoped
view of these beliefs.
Popular guidebookson pregnancy document the developmentof one’s “baby”
from conception to birth-from fertilization to meiosis, the division of the egg into
two identical cells “thirty hours after fertilization,” and then “some ten hours later”
further division into four cells, 16 cells on day 3.64 on day 4, “a tube-like heart”
on day 22 that will begin to beat on the 24th or 25th day, a stomach at week 6,
eyelids in week 7, and so on (McClure and Bach 19861617).
Pregnancy books describing fetal development are followed by parenting
guides with titles such as The First Twelve Months of Life: Your Baby’s Growrh
Month by Month (Caplan 1973). The front cover of my 1973 edition boasts “over
450,000 copies in print” as well as the fact that the book includes “monthly growth
charts.” Some such books describe “slow” and “superior” as well as “normal”
developmentof the baby’s visual, auditory,tactile, mobility, language, and manual
competence (Doman 1988). but in all cases, the developmental tales are linear
ones.22These parenting manuals are accompanied in many middle-class American
homes with baby books andor first-year calendars for recording and chronologically plotting all the important “firsts”-baby’s first tooth, baby’s first step, and so
on-that chart the dramatic but also incremental developmentof a normal infant’s
In addition to these unofficial records, most pediatriciansprovide a pamphlet
in which they chart the baby’s development (weight, length, head circumference)
at regularly scheduled checkups. Although some babies are relatively large and
others relatively small (most babies, like adults, being either above or below
average in size), the graphs provided by the National Center for Health Statistics
show steady, upward, linear development for each of the seven delineated percentiles, and it is in comparison with these norms that each individual child’s development is plotted.
Not all babies, however, develop “normally” (Landsman 1994; ScheperHughes 1992).2‘ In the United States, many such babies spend time in neonatal
intensive care units. In this essay I explore some of the ways that the discrepancy
between how these babies develop (or fail to develop), and what is expected in
terms of “normal development,” is discursively managed in a neonatal intensive
care unit. In so doing, I examine and compare the three metaphors most commonly
used by the physicians and nurses who cared for him to describe Jasper’s changing
condition and by other parents of premature infants who shared their stories with
us: the roller coaster, graduation, and course. This analysis is based on the three
primary forms of data with which I crafted my ever-changing analysis of Jasper’s
condition during his stay in the hospital: (1) The reports from the nurses caring for
him transmitted to me and my husband during our daily, consecutive visits to him
in the NICU and to us over the phone when I called to check on him before going
to bed, in the middle of the night, while up expressing breast milk for him, and in
the morning upon ri~ing.2~
This information derived from a series of tests and
observationscarried out by Jasper’s nurses at three-hour intervals and recorded on
daily flow charts. (2) Periodic reports to us from Jasper’s physicians-based on
twice-daily rounds by the attending physician, residents, and medical students,and
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“consu1ts”fromother specialistswho examined him. And (3) anecdotes about other
premature and/or disabled children told to us by anyone and everyone who knew
of Jasper’s plight.
The Story
Episode One
On May 27, in the 29th week of my pregnancy, I was hospitalized with
toxemia. During the following ten days my blood pressure, though erratic, reached
ever-new highs. On June 5 my doctors decided that it was no longer safe for either
me or the baby to continue the pregnancy. On Tuesday, June 8, after a three-day
induction, Jasper entered the world with a hearty cry. The waiting neonatal team
whisked him into an anteroom where they examined him and assigned him Apgar
scores of 8 and 9, news that I heard with much relief and not a little pride. For the
30 hours following his birth, during which I was kept under critical care, Jasper
continued to do very well. He was put in a head box, which, my husband and I had
learned during our visit to the NICU, was the least severe of the four types of
respiratory assistance that neonates are typically
My parents, who arrived
from California within hours of his birth, proudly reported to me that he was the
healthiest looking baby in the entire unit. At 600 A.M. on Thursday, June 10, just
hours after I had been transferred to a regular care ward, I received a phone call
from the chief resident in the NICU telling me that Jasper had developed a
pneumothorax, a small hole in one of his lungs. I called my husband immediately
but found that I could not wait for him and had a nurse wheel me to the NICU to
see my son for the first time since his birth. When I arrived in the unit in tears the
resident seemed baffled and asked me why I was crying; was it because of the
pneumothorax? When I concurred she explained that these are very common in
neonates and generally resolved themselves with very little difficulty. A hole in a
lung seemed quite a drastic Occurrence to me, but in fact the doctors simply made
a hole of their own in his side, inserted a tube in his chest to release the air that had
built up between the lung and chest cavity, and administered a couple of doses of
surfactant, a sticky substance that naturally coats mature lungs. Within two days
the hole was gone, but in the meantime he had been “intubated”-oxygenated air
was now being sent to his lungs via an endotracheal tube. This signaled a dramatic
“reversal” from the least invasive to the most invasive form of respiratory assistance.
My husband and I had learned to lay great stock in the type of respiratory
equipment utilized as a sign of the baby’s overall health from a number of sources.
The previous fall a nurse from the NICU guest-lectured in a course 1 team-teach
on medicine,power, and gender the week that the studentsread the Stinson’s (1979)
article “On the Death of a Baby.” In telling of the technological advances being
pioneered in Albany Medical Center’s NICU, she had focused on new therapeutic
approaches for respiratory distress syndrome among premies.
The primacy of neonatal respiratory systems (and the technological systems
that served them) in the NICU worldview was reinforced during our visit to the unit
in preparation for Jasper’s birth when the nurse who took us around explained what
respiratory equipment our “30-weeker” was likely to need. Similarly, in the daily
“HOW’S THE BABYDOING?’
633
deliberations with my obstetricians about whether or not to go ahead and induce
my labor or hold out yet another day, the maturity of Jasper’s respiratory system
was the predominant consideration,and once we decided that I could not carry him
much longer, we weighed the risks and benefits of waiting one or two more days
so that I could be given steroids that would help mature his lungs. After his birth I
learned that my obstetriciansmade rounds in the NICU every morning to check on
the babies they had delivered before going to see their own patients, generically
referred to in hospital lingo as “the moms.” On these rounds they evaluated the
status of the babies almost exclusively on the basis of their respiratory system;
taking in at a glance which contraption they were hooked up to and where the dials
were set. So to our mind, his intubation signaled significant “negative progress.”
“It’sa Real Roller Coaster”
My memory of the day we learned of Jasper’s pneumothorax is quite foggy,
but I do remember my husband telling one of the nurses or doctors that “people had
warned us that it would be a roller coaster.” I was struck by this remark because for
one thing, I had somehow missed this warning. But as is so often the case, once
something comes to one’s attention, it is seen or in this case heard everywhere
thereafter?’ I could not recall other events in my life that had been so described,
and I pondered the meaning of this metaphor, probing it for some secret wisdom
that would help me to understand what I was going through.
Since the 1920s roller coasters have been used metaphorically to “describe
everything that vaguely has an up and down or violent motion,” particularly “the
ups-and-downs of love-or life itself‘‘ (Cartmell 1987:1). The roller coaster metaphor did seem to capture the alternating moments of hope and despair that we
experienced during those seven long weeks.
Another important characteristicof roller coasters, though not always implied
in their metaphoric use but certainly of relevance in this context, is the terror
associated with these rides. But whereas the thrill of roller coasters hinges on
imagined danger, the dangers in a NICU are all too real.
Another dimensionof roller coasters is that they are cyclical--one always ends
up at the same place one begins, getting nowhere, making no progress. While this
may be an idiosyncraticinterpretationof the metaphor, the image of a roller coaster
provides a striking alternative to common narratives of progress. In the narratives
of pregnancy loss 1 have been analyzing these last few years I have noticed how
the annual seasonal cycles of nature are routinely transformed into linear narratives
of personal progress that always end with spring (Layne 1994,1996). In contrast,
in the NICU setting, roller coasters are considered an apt metaphor for the experience of having one’s child be subject to the cutting-edgetechniques of the NICU’s
life support system. It is ironic that these great feats of engineering should serve as
a tropic alternative to our cherished technoscientific myth of perpetual progress.
As Guillemin and Holmstrom remark of “the roller coaster clinical course, with
various ups and downs (comebacks and crashes),” there is no guarantee that one
will ever get off this ride, no certainty that the biotechnical interventions will
succeed and prevail. “Of those babies with an up-and-down course, some die and
some survive” (Guillemin and Holmstrom 1986 145, cf. 149). In fact, to a signifi-
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cant degree the very existence of a “roller coaster clinical course” is an artifact of
“heroic” NICU
Episode Two
On Friday morning I was well enough to go home, and Jasper had markedly
improved in the 24 hours since his pneumothorax had occurred. In two days’ time
I had gone from critical care to being deemed well enough to go home, and Jasper
had lived through his first cri~is.2~
By the time I went up to say goodbye before
leaving the hospital, his pneumothorax was gone and they had taken his breathing
tube out and replaced it with anasal CPAP (ContinuousPositive Airway Pressure).
Our spirits rose; it looked as if we might get through this ordeal after all.
That evening, however, the chief neonatologist,Dr. Joaquim Pinheiro, called
to say that he had “very bad news for us.” Many, including myself, (Cartwright
1993; Fletcher and Evans 1983; Layne 1992; Oakley 1984; Petchesky 1987; Rapp
1996; Rothman 1986; Spallone 1989; Taylor 1992, 1993) have written about the
use of sonograms in obstetrics, but I was not aware that sonograms had become
routine in the care of premature infants as well. On the afternoon I was released
from the hospital, Jasper was administered a routine cranial ultrasound, and that
was how they discovered that he had had a severe intracranial hemorrhage. Our
belief in the status of his respiratory system as a reliable sign of his overall health
was suddenly shattered. The severity of central nervous system bleeding is scored
on a scale of 1 to 4, with 4 being the most severe, and it was a level-four bleed that
the doctors had almost inadvertently found. Dr. Pinheiro described this finding as
“shocking” and “stunning”givenJasper’s apparenthealth. Jasper had not evidenced
any of the typical symptoms of distress associated with such a severe bleed.30Such
injuries bring with them multiple critical risks that were spelled out for us during
a two-hour consultation the following day with Dr. pin heir^.^' We were told that
within a few days the blood could clot in such a way that there might be more central
nervous system damage and/or death. If Jasper survived the next few days, the next
temble thing that could happen, we were informed, was that the blood that now
filled one of the lateral ventricles of his brain could block the tube through which
spinal fluid drained into the spinal cord, and hydrocephalus, popularly known as
“water on the brain,” would occur. Depending on how sudden and how severe this
was, it would either be treated with drugs to slow down the production of spinal
fluid or a shunt would be surgically inserted into his brain to drain off the excess
fluid?*If these immediate survival problems were resolved we would then be faced
with a number of “quality-of-life”issues. Dr. Pinheiro told us that occasionally a
child with this type of injury showed no long-term consequences, but this was
extremely rare and it was most probable that Jasper would have difficulty with his
motor development and possible that he might have diminished intellectual capacities as well. In the language of roller coasters, this counted as a major plunge.
And so for the next few days we waited anxiously for disaster to strike. During
this time Jasper’s respiratory system continued to steadily improve (he was taken
off the nasal CPAP and placed on a nasal canula), and while we waited for
developments regarding his neurological system, we gradually learned of other
dimensions to be taken into consideration in trying to answer the question “How’s
“HOW’S T H E BABYDOING?’
635
the baby doing?” and other metaphors around which we could organize our
experience of his condition.
“Graduation”
The roller coaster metaphor referred not just to Jasper’s condition but also to
the emotional ups and downs that we as parents were to go through in response to
his changing condition. Tellingly, this is the metaphor we were introduced to by
other parents. In contrast, the tropes that were most commonly used by the NICU
staff, “graduation” and “course,)’referred exclusively to the baby’s experience.
After we had been regular visitors in the NICU for some time, we discovered,
or more accurately were taught by the nursing staff, to recognize a number of
markers of linear progression through the MCU. Each move from one such marker
to another was described by the nursing staff as a “graduation.” One clear marker
was the type of bed that the child occupied. Very sick children are kept in open
warming trays where they can be reached quickly. After the child has stabilized,
she or he is moved to an isolette, a lucite box equipped with two portholes on each
side through which the baby can be touched or spoken t0.9~While this looks to
laypersons as less “normal” than the open beds they first occupied, we learned that
the move to an isolette signaled definite progress; it meant Jasper was one step
closer to being able to come home. And once he was moved to an isolette we were
also allowed to dress him in the clothes we had bought for him in anticipation of
his birth. The final stage of progress in terms of furniture is to a crib, which usually
coincides with another important “graduation”-from the special care nursery to
the intermediate nursery, a kind of halfway house for ~remies.9~
The final graduation, of course, is being able to go home and to become officially an “alumnus”
of the NICU.35
Another use of the graduation metaphor concerned Jasper’s dependence on
external sources of heat. My journal entry for Thursday, July 22, reads:
Things are happening so fast! He graduated today from heat. When I came in I
found him under a blanket. Karen took his temp before getting him out to eat and
he was fine! HEGRADUATED!From now on he will have the doors to his isolette
left open and will sleep swaddled in one blanket and covered by another. He also
graduated in terms of nipples [from the red premie nipples to the beige, full-term
ones]. Doing fine with them too!
Food was another important area in which the graduation metaphor was
regularly employed, and within this domain babies could be seen to be making
progress in terms of type, method of delivery, and amount they consumed. During
the first few days of his life Jasper was fed intravenously. Once his respiratory
system stabilized, his IV was supplemented with “feeds” via a nasogastric tube,
and eventually he became strong enough to eat from a bottle. He was fed something
called SPREM,a solution, which we referred to among ourselves as baby spam,
and this after a few days was supplemented with “yummy” lipids.
On Sunday, June 13, six days after his birth, Jasper was given his first breast
milk. I was allowed to pour a tiny amount (just 3 ccs, less than a teaspoon full) of
my milk into his feeding tube and encouraged by the nurses to experienceand enjoy
the feeling that I was feeding him even though it was in this highly convoluted
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ANTHROPOLOGY
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manner. In fact, my husband and I were happy to be there to share in this important
“first.”But, as it happens, his digestive system was not ready for milk. That evening
his girth increased, “hyperactive bowel sounds” were heard via stethoscope,
“aspirates” (i.e., undigested food), were found in his stomach, and his bowels were
deemed “loopy.” As a result, his “feeds were held” while the doctors investigated
the possibility of NEC, a common intestinal disorder among premies. By June 17
an “intern progress note” deemed him “difficult to feed.” Repeated abdominal X
rays showed no signs of disease and over the next two weeks milk was reintroduced
several times. But even in smaller and less frequent doses he could not digest it.
Eventually, though, Jasper did grow to “tolerate his feeds” and then over time
to graduate off the IV, off the SPREM, and to eat ever-increasing amounts (with
one additional cc of milk being added first every shift, and then every other feed,
and finally at every feed, i.e., every three hours). As his weight and strength
increased he was also able to drink more and more of his meals from a bottle. Each
of these developments was presented to us by the nurses in terms of graduation.
My journal records a number of these graduation moments: “July 5 . 5 A.M., I call to
check on Jasper and the nurse tells me that he’s ‘wonderful,no decels [decelerations
of his heart rate] or anything like that, we’re putting him up to 23 ccs, he’s just been
beautiful; no more SPREM, they trust him to keep doing well. He graduated!’ ”
and my pocket calendar is sprinkled with entries like “52 ccs!” and “90 ccs!”
Though the doctor had warned us not to expect “steady progress” in this regard,
once Jasper finally started to eat, this was the one area in which we could see
frequent, quite steady, and very visible pr~gress.~’
The importance of food in this regard was reinforced for me one day when
upon returning home from the hospital I was intercepted by an older neighbor who
wanted to know how Jasper was doing. When I started to give her a typical
accounting of his condition, which went something like, “On the one hand x, but
on the other handy,” she broke in and asked somewhat impatiently,“Yes, but is he
gaining eight?"^"
It was only a partial relief to me to discover the graduation metaphor, however,
because by the time I discovered this narrative of progress in the NICU I had already
become suspicious and self conscious of such narrative structures, having realized
in the first tumultuous week or two that every time I answered the question “How’s
the baby doing?” by describingJasper’s latest “achievement,” “hurdle,” “set back,”
or “down turn,” how dependent I was on linear narratives and yet how inadequately
such narratives served to describe his complex and changing condition. And when
I remarked upon their use of the language of educationalprogress to the nurses, one
nurse laughed and said, “Yes, but it’s not like in the real world, we sometimes take
the degrees back!”
Episode Three
We learned only too soon how true this could be. On Monday, June 14, we
were able to hold Jasper for the first time; on Wednesday the 16th he was put back
on “room air,” breathing once again with no assistance, but the very next day his
temperature started to fluctuate and his head circumference increased .5 centimeters. The doctors suspected an infection. In children this small infections are not
site specific but affect entire systems,so samples were taken of his urine and blood,
“HOW’S THE BABYDOING?’
637
a spinal tap (lumbar puncture) was perfomed for a sample of spinal fluid, and he
was placed on antibioticspending cultures. The next day (Friday, June 18) his head
circumferenceincreased again and neurosurgery was called in. A cranial ultrasound
showed that the ventricles in his brain had increased in size, and a neurological
exam found him “floppy.” The hydrocephalus we had warily awaited had arrived
and Jasper was put on medication to reduce the production of his spinal fluid. As
if that were not bad enough, on Sunday evening, June 20, Jasper started to have a
series of apneas (the technical term for stopping breathing) and his heart rate started
to drop suddenly (bradycardias). Another spinal tap was performed, he was given
a blood transfusion, and he was demoted to a radiant warmer and intubated again.
Back to square one? No,worse really, but what is worse than square one? (At this
point he was weighing less than his birth weight-l,350g, down from 1,410g at
birth.) We sat by Jasper’s side all day Monday, June 21, wondering if he were going
to die. He lay quietly, not moving, but with his eyes eerily and uncharacteristically
open throughout that entire day. The next day the blood culture showed that he had
a staph infection in his circulatory system (news that we actually heard with relief,
having feared it was meningitis.) By Wednesday, in response to a new antibiotic,
he had rallied. By June 23 he was back on a CPAP, with only room air but needing
pressure to help him breathe, being too weak to do it himself, and on June 24 we
were able to hold him again. My journal entry that day reads,
We were thrilled to find Jasper on room air, no CPAP,no canula, nothing. He
looked much better, was awake, crying, moving about, but definitely looked like
he had been through a lot. I asked about his weight. He’d lost another 25 grams,
almost an ounce. His ribs stick out now and his eyes look sunken. His arms and
legs have always been skinny but this is new. Karen said the docs had been talking
about starting to feed him again but she had urged them to wait a little. B was
pleased. I was disappointed.
Doctor Pinheiro came by, apologies both ways about missing each other
yesterday. Good news-the test to check the spinal fluid pressure showed levels
in the high normal range. Even better-he’d drained a good deal of fluid off which
indicates no obstruction. He was pleased to see Jasper so much more active than
yesterday and was inclined to attribute the improvement to the draining of spinal
fluid. He said that they would try food again m n but warned us that it would not
be a straight c0urse.3~
This was not the first time I had come across the term course. One day one of
the nurses we got to know well told us of some of her past patients who had had
severe intracranial hemorrhages. I asked if she was implying that Jasper was likely
to have a similar outcome. “Oh no, not at all. I was just describing the various
courses that these things can take.” I had also heard the term from time to time
during our frequent phone calls with one of Jasper’s godmothers, a pediatrician in
California.&She had tried to offer a consistent source of informed hope, but with
the advent of Jasper’s infection she sadly observed that his was a “rocky course.”
Course
“Course” (from the Latin word cursus, to run) is an interesting metaphor in
that it describes a journey but does not imply anything about the direction or ease
of such a trip. In fact, the image that came most quickly to mind when pondering
638
MEDICAL
ANTHROPOLCGY
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the meaning of “a rocky course” was that of a ship at sea being buffeted by a
This image captured for me the physical hardship of Jasper’s experience,the terror
of confronting brute natural forces (however complexly mediated by NICU technologies), and the terribly frightening feeling of not knowing where he/we were
headed.”
Surprisingly, and although used routinely in medical discourse (and social
scientific accounts thereof), course is not a standard entry in medical dictionaries.”
Equally surprising is the fact that though several of the 40 meanings of the term
listed in The Oxford English Dictionary (OED) relate to affairs of the body andor
medicine (e.g. in earlier times, “each of several successive attacks: of disease”; or
“the monthly course of women”),” none actually refer to “the course of disease.”45
Nevertheless,“course of disease” is one of several uses of the term which Guillemin
and Holmstrom documented in the NICU setting.&
Another common and related use of the term in the NICU, as well as other
medical settings, is “course of treatment”-“a planned or prescribed series of
actions or proceedings: as of medicine” (OED).’” Guillemin and Holmstrom’s book
includes a neonatologist’s account of how he figures out “what treatment course
the new born should be on” (1986 1 15).
A third usage-that of the “clinical course”-is premised upon the two
previous ones. Guillemin and Holmstrom describe how the physicians went about
informing parents of the impending death of their infant by telling them that “the
clinical course is not hopeful” (1 9 8 6 153).The “clinical course” presumably differs
from “course of disease’’ by reference to the patient’s response to the clinical
interventions, or “treatment course.” In other words, this usage combines both the
observed regularity of diseases and their normal response to certain interventions
with their unique manifestations in a particular individuaLa
Because of the multidimensionality and lability of “course” in the medical
context, this trope complements, or perhaps in a sense counteracts, the other
pervasive form of prognosticating in biomedical discourse, that of Statistical
probability. Whereas the statistic is a conglomerate construct that privileges the
norm, the metaphor of “course” is individual and allows for the idiosyncrasy and
unpredictability of health and illness.“
Much has been written in recent years about the pitfalls of medical statistical
reasoning from the point of view of patients (Duden 1993:25-29; Modell 1989;
Rapp 1994b). These studies have focused on the gap between what the health-care
providers intend by such figures and the way patients make sense of the numbers.
However, as we have seen, within medical discourse itself, this tension between
abstract, depersonalized,decontextualized,disembodied norms of statistical probabilities and the embodied, holistic, multilayered complexity of actual patients is
practically mediated by the concept of “course.’lso
Guillemin and Holmstrom noted the tension between statistical versus caseby-case analysis in the NICUs they studied remarking upon the tendency of
neonatologists to “discount the odds.”
Neonatologists do not think in terms of statistical probability but of the experimental, case-by case advancement of the birth weight frontier. In clinical practice,
the focus was on the exceptional case, the ‘write-off‘who survived against all the
odds and refuted the power of statistical forecasting. [ 1986 1281
“HOW’S THE
BABYDOING?’
639
Although course is a medical term, it is one that is consonant with the
experience and vocabulary of patients. Hawkins found “journey” to be one of the
most frequently used metaphors in contemporary American personal accounts of
encounterswith illness (1993:78-90)?’ Sometimesthe journey myth takes the form
of a quest, other times that of an exile. In either case the strange world that is
explored may be the disease, the hospital, or one’s own mind and, as Hawkins
observes, this metaphoric journey is often one that intimate onlookers share
(1993:81).
According to Hawkins, “the journey myth is linear, realized in a metaphorical
movement away from and back into the everyday world.” Yet clearly some never
return to the ordinary world (they die), others do so only provisionally (during
remission or those afflicted with chronic illness), and still others, like those in
neonatal intensive care units, have not yet been a part of that world (1993:88, cf.
87). Just as important as those who fiid direction in their journey are those who
describe feeling lost: whose maps are “insufficient for charting the course,” that
having “fallen off the map, the world, the knowable,” they now inhabit “a chartless
land” (1993:81). Clearly for some (as Hawkins acknowledges) the journey is less
like a “pilgrimage” and more like “limbo,” having less to do with directed,
purposive movement than passive patienthood or desperate groping for a way
(1993:83)?2
Conclusions
During Jasper’s hospital stay I was baffled and intrigued by the inappropriateness and elusiveness of narratives of linear progress in this highly technical
setting. Ultimately I found the three metaphors that were most frequently used in
discussing his condition offered an interesting and very useful range of possibilities
with regard to the issue of linear progress. Of the three, the graduation metaphor is
the only one that preserved a narrative of linear development. In my experience it
provided a much-appreciated sense of progress for the nurses and parents who
participated in the graduation moments. The roller coaster metaphor, in contrast,
provided an expressly nonlinear, maybe even antilinear, narrative structure. This
metaphor, taken from a known but extraordinary realm of life, helped bridge the
gap between the normal course of events and the unanticipated, almost unthinkable
horror that Jasper’s hospitalization was for us. Although the roller coaster provided
a nonlinear narrative framework with which to understand our experience, it is not
a metaphor that encourages acceptance. My overwhelming desire was for somebody to stop the ride and let me off! The course metaphor falls someplacebetween
the other two in that it is premised at once on both the observable regularity and
irregularity of life. To know that most times a particular disease develops in a
particular way is also to know that it does not do so every time; likewise, to know
that most patients respond to a certain treatment in a predictable way is also to know
that some patients will not so respond.
Now it is possible to better understand why it was so hard to answer the
question, “How’s the baby doing?” Those who work in or study neonatal intensive
care units soon learn that “uncertainty dominates” such units (Hancock 1976:422).
There is uncertainty about causes. “Approximately half of all women who deliver
too early go into premature labor for unknown reasons” (Harrison 1983:16). “Even
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MEDICAL
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when all the known causes of prematurity are taken into account, we are often
unable to explain what happened in a given pregnancy” (Avery and Litwack
1983:22). Prognosis, which by definition is wrought with uncertainty, is particularly troublesome in neonatology (Mesman 1994; Mesman and de Vries 1991).
“Due to the highly innovative, ‘experimental’ nature of neonatal intensive care ..
judgments [about the kind of future that awaits the patient] often prove notoriously
difficult’’ (Anspach 1987:216)” According to one bioethicist, more than in any
other field of medicine, decisions in neonatology are plagued by “prognostic
perplexity” (Henig and Fletcher 1983:117).
It is not surprising, then, that a parent might feel confused. A child’s condition
can change dramatically from one day to the next, especially during the first few
days of life. ‘The first day the doctor said the baby had a 25%chance of survival.
The next day, [the parents heard] the odds were 50-50” (Avery and Litwack
1983:44). Given the high level of medical uncertainty,doctors do not always agree.
“We didn’t know what was going on. One doctor would say one thing, and another
disagreed” (Avery and Litwack 1983:46, Mesman 1994). In fact, there is some
evidence that precisely in cases where there is the most medical uncertainty, parents
are provided with the least amount of information (Sosnowitz 1984397-398).54
Yet in both academic and popular literature on NICUs, the confusion that
parents may experienceis often attributed to their psyche rather than to the situation.
For instance, Hancock describes parents in this situation as often having “cognitive
confusion,” which according to the psychological theory of crisis is a normal stage
of coping with a crisis, something the parents must overcome (Hancock 1976:423).
Several authors have noted the tendency for parents to try to make sense of
their confusion by either deciding that the baby will get better and survive, or the
baby will get worse and die. This tendency is typically viewed negatively as
“polarity, oversimplification”(Hancock 1976429), and often discussed under the
pejorative rubric of “denial.’”s For example, in The Premature Baby Book the now
familiar five stages of dealing with grief developed by Kubler-Ross with regards
to bereavement are applied to parents’ reaction in coping with the crisis of
premature birth. According to Harrison (19835). the second stage, “denial,” “a
temporary blocking out of reality” can take several forms, including persistent and
unwarranted optimism or pessimism along with an inability to comprehend any
conflictingviews (1 9835). To illustratethis Harrison provides the following quote:
.
My husband was sure everything would turn out all right. I was frightened that
the baby would die or be damaged. We would go together for conferences with
the doctor and come away with totally different ideas about what he had said.
[Harrison 198351
She (19835) attributes this tendency to “assume that ‘everythingwill be fine’
or, on the contrary, that ‘all is lost’ ” to a psychological need for a certain level of
certainty. “A fixed attitude, even an unrealistic one, seems to help in coping with
an otherwise unbearable insecurity” (Harrison 1983:5)?
However, if one looks for an explanation at the cultural rather than psychological level, one gets a rather different picture. The sifting through and interpretation of myriad confusing and often contradictory data about the status of one’s child
and then synthesizing this into a coherent picture about what the future is likely to
bring, is a form of lay progno~ticating.~’
As noted earlier, the social scientific
“HOW’S THE BABYDOING?”
64 1
literature has not often concerned itself with the sense-making practices of family
members of patients or other concerned lay onlookers, and this pertains to NICU
parents as well. To the extent that they are discussed at all, it is generally in terms
of the way they are “managed” by the medical staff (Anspach 1993; Guillemin and
Holmstrom 1986; Heimer and Staffen 1995; Sosnowitz 1984), or what, from an
ethical point of view, the proper role for parents ought to be in making decisions
about the care of their critically ill newborns (Brody 1987:14&161; Levin 1990).
The narrativizing practices of NICU parents (or other concerned onlookers) have
not, to my knowledge, been the subject of study?s
Even in Anspach’s (1987) study of a NICU as “an ecology of knowledge,”
the knowledge-making practices of parents are absent. She (1987:215) focuses on
the different prognosticating practices of the “three groups of participants” who
reach life-and-death decisions-the attending physicians (neonatologists), residents, and fellows, and n~rses.5~
This startling absence is explained in her book on decision making in NICUs
where she devotes two of her six chapters to the interactions of “professionals”with
“parents.” Here she shows how “organizational features” “place parents on the
periphery of life-and-death decisions”(1993: 123) and how their assent to decisions
made by the medical team is routinely “produced.” In other words, her portrayal is
of parents as knowledge consumers rather than producers, a status that she argues
need not and indeed should not be the case. (See also Mesman 1993:6,19949.)
My case suggests that the process of lay prognostication is profoundly influenced by the prevalence of linear narratives of progress in our culture. Coming to
an understanding that one’s baby will probably get better or worse is an effort to
make sense of the situation using the cultural resources available.
My experience as a NICU parent suggests that the dominant discursive forms,
which privilege narratives of linear progress, are ill suited to this experience and
do not serve the parents of neonates well. In other words, while I agree with
Harrison and others about the difficulties that may arise from the tendency to
imagine one’s baby’s future as progressing in a linear fashion toward either
wellness or death, I disagree about the source of these problems. Rather than seeing
this tendency as an aberration that individuals in trauma succumb to, I see this
process as endemic to our culture. Like Newman (1988:9), I believe our national
faith in progress has resulted in a “stunted symbolic vocabulary” for discussing
anything that does not conform to our expectation for linear progress.
Physicians and nurses who deal on a routine basis with such problems have at
hand a specialized, more appropriately labile set of concepts and techniques with
which to discursively manage the “ineradicable uncertainty” that is central to
medical practice (Hunter 1986629). While embracing a metanarrative of linear
progress in terms of the great march forward of the biomedical enterprise, practitioners recognize that such models do not apply uniformly at the level of individual
patients.b0Although there is an “emphasis on victories” in NICU culture, because
of the relatively high mortality rate in such units, NICU staffs cannot escape the
ever present possibility that their patients will die (Guillemin and Holmstrom
1986 129,144).
Given the media hype surrounding ever tinier “miracle babies” who survive
in NICUs and the invisibility of those who do not thrive or survive, this distinction
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ANTHROPOLOGY
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tends to be lost on the public. Much like other events that do not conform to our
master narratives of linear progress (e.g., miscarriages and stillbirths,Layne 1992;
downward mobility, Newman 1988), a baby that does not get better despite the
finest medical care remains “a hidden dimension of our society’s experience
because it simply does not fit into our cultural universe” (Newman 1988:9). This
culturally sanctioned silence results in an “impoverished public discourse” (Newman 1988:9) that exacerbates the experience of parents whose babies do not have
sterling careers as NICU patients. The ambiguity entailed in the clinical notion of
course could enrich our public discourse in ways that would be of benefit, not only
to NICU parents, but to all.
Epilogue
In the end ours is a happy story, one that fits well enough into the mythic
pattern of a hero’s tale. Jasper turned out to be one of the lucky ones. He has not
beaten the odds, but he has done very well by them. On July 27,16 days before his
due date, we brought him home, a seven-week old weighing 4 pounds, 10 ounces.
Once his digestive system matured, he started eating constantly, trying to make up
for lost time, and we were finally able to assure our well-meaning neighbor that he
was putting on weight. By Halloween he had so many chins his pumpkin outfit
wouldn’t snap around his neck. Jasper has flourished in other ways too. At his
six-month assessment, the developmental pediatrician assured us that “disability”
would be an optional term for Jasper. At this writing, Jasper is walking and talking
up a storm. He is a bright, outgoing, cheerful, opinionated two-year-old who loves
books, anything with wheels, and roughhousing with his older brother. The future
is uncertain for Jasper, as it is for us all. May his journey be a long and happy one,
no matter how winding or straight.
NOTES
Acknowledgments. This paper was a surprise presentation on the panel “De-Natured
Bodies: Cultural Studies, Technoscience, and the Remaking of Boundaries” organized by
David Horn and Jennifer Terry at the American Anthropology Association’s annual meeting
in 1993, Washington, DC. I want to thank the organizers for their tolerance and my
co-panelists and the audience especially Anne Balsamo. Lisa Cartright, Gary Downy, Gail
Landsman, and Rayna Rapp for the support and encouragement they offered on that
occasion. This essay was much improved by the comments and suggestionsof Gay Becker,
Monica Casper, Mary Huber, Deborah Heath, Barbara Koenig, Roxanne Mountford, Andrea
Rusnock, and two anonymous MAQ reviewers. In addition, I want to thank Dr. Joaquim
Pinheiro for his thoughtful response to an earlier draft. Thanks also go to Jennifer Snediker
and James Destro, my undergraduate research assistants, and to Kathie Vumbacco for
editorial assistance.
I remain eternally grateful to our doctors Philip Clements, Bruce Clark, Virginia
Guigillano, Peter Horvath, Eileen Joyce, Joaquim Pinheiro, John Waldman and the many
wonderful nurses, especially Linda Randio and Chris Mexler, who provided Jasper and me
such excellent care while we were in the hospital.
Correspondence may be addressed to the author at Department of Science and Technology Studies, Rensselaer Polytechnic Institute, Troy, NY 12180; laynel@rpi.edu.
I. First-person narrativeshave also been important in Afro-American studies (McKay
1989).
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2. It is worth remembering, as Geertz so cogently points out, that this issue is not new
to anthropology. The “establishment of an authorial presence within a text, has haunted
ethnography from very early on” (1988:8,9).
3. See also Frieden 1989 and Behar 1993 for examples of this blurring and Clifford
1978 on “ethnobiography.”
4. He defines this dilemma as the problem of finding “somewhere to stand in a text
that is supposed to be at one and the same time an intimate view and a cool assessment”
(1988:10). Fmt person accounts like mine offer both an “intimate view” and an “assessment,” though not a “cool” one,but rather one that clearly acknowledgesthat the assessment
is being made by an engaged, positioned subject.
5. There are, of course, first-person accounts in medical anthropology (Murphy 1987;
Rapp 1984). the sociology of medicine (Paget 1993;Zola 1982). and by physicians (Sacks
1984). Sometimes, as in my case, a personal experience serves as the impetus for research
(Layne n.d.; Murphy 1987;Rapp 1984); other times, as in Paget’s study of medical
misdiagnosis, the research choice precedes one’s unexpected personal encounter with the
subject of research. More typically, the classic fmt-person tale of entry (Geertz 1988;Pratt
1986). has been replaced with a new kind of entry story. Instead of describing one’s fmt
encounter with a far-off and exotic culture, the fmt-person account now often recounts a
“personal experience” with the aspect of one’s own culture that is now being studied. For
example, Martin (1994b) begins her book Flexible Bodies: Tracking Immunity in American
Culturefiom the Days of Polio to t k Age of AIDS by describing her memory of the death
of her brother, age two. to polio when she was a child.
6. Hawkins’s (1993)study of pathographiesdid not include accounts concerning sick
children. This may account in part for the fact that of the over one hundred pathographies
she analyzed, only a handful are written by a “loved one.” Hawkms describes pathography
“as the patient’s voice” (1 993: 1 1). Yet because of the special status of infants as n o n n m tivizing subjects. in cases like the one I describe. a patient’s own account is obviously not
an option for “returning the experience of the suffering human being from the periphery to
thecenterofmedicine. . . .forputtingthepatientbackintothemedicalentelprise”(l993:13).
See Brody 1987105-1 16 on litexmy portrayals of “the effect of sickness on others.”
7. See Layne, in press, for a discussion of some alternatives.
8. Other examples include cases of mental illness or critical illness. See Glaser and
Strauss 1966 on the terminally ill.
9. See Levin 1990 for a review of the literature on decision making in NICUs
internationally. Harrison’s “Principlesfor Family-Centered Neonatal Care” (1993)focuses
on the rights of parents, although it is not restricted to this. Another subset of studies
involving parents concerns the issue of parental bonding (e.g., Benfield et al. 1976).Those
studies that have looked at parents’ beliefs about the condition of their children are typically
linked to concerns about parental bonding and have tended to be judgmental-contrasting
parent’s emotionallysullied, mistaken beliefs with ‘‘the truth”(Minde 1982;Solnitand Stark
l%l).
10. Ofcourse, decision making entails meaning making, but as will be discussed in
the conclusions of this paper, the social scientific literature on NICUs, on the whole, gives
short shrift to the agency of parents.
1 1. In fact, my ability to distance myself, however provisionally, from the immediacy
of the experience was an important coping tool for me during those months of crisis.
12. In offering an anthropological critique of Latourian actorhetwork theory as a way
to understand the relationship of “science” and “society,” Martin asks “what if. . .people
who call themselves scientists are continuously interacting with people who do not call
themselves scientists? What if both, in complex cultural and historical circumstances are
forging ways of acting, being, and thinking in the world, or in other words forgingcultures?”
(1994~7).
My essay describes one particular example of such an interaction and illustrates
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some of the ways clinicians and lay people forge “ways of acting, being, and thinking in the
world.” In other words, it is an example of “knowledge in action” (Martin 1994a:9) in the
inherently multiply-peopled context that clinical settings, by definition, are.
13. In addition, the thoughtful response to this essay by the neonatologist most
involved demonstrates the third of Martin’s ( 1994a) metaphors for thinking anthropologically about technoscience, that is, the “string-game”-like character of knowledge making
between scientists (or in this case, clinicians) and others.
14. According to White this faith in perpetual progress is “rooted in, and is indefensible
apart from, Judeo-Christian teleology,” being “unknown either to Greco-Roman antiquity
or to the Orient” (White 1967:346). See Lasch 1991 and Nisbet 1980 on the history of
Western ideas of progress.
15. According to Winner even some well-known critics of technoscience, like Ellul,
treat “the growth of scientific and technical knowledge [as] an entirely linear, rational, and
additive accumulation, an ”image that scientists and technicians [have] long held of their
work” (197753). .
16. These views are succinctly expressed in the opening chapter of a textbook on
technological change: “The stunning advances of technology have fueled the belief in
general human progress. . . the belief that progress is a natural part of human life” (Volti
1988:9-10) According to Volti. “the process of technological change is usually one of
continuous improvement” (l988:8), and he describes the process of the “advance” of
particular technologies as an S-shaped curve, asserting that even “after the rate of advance
. .. reaches a maximum, [and] begins to proceed at a slower pace, [it] never levels off’
( I988:9).
17. Linear narratives of medical progress, like those describing other technological
enterprises, often take the form of evolutionary tales. For instance, the first chapter of
Bronzino et al.’s Medical Technology and Society is entitled “Evolution of the Modem
Health Care System” and begins with “prehistoric times.” See Winner 1977:57-73 for a
discussion of the problems stemming from the evolutionary metaphor.
18. Another example is provided in the quote by William James with which Avery
(1983: 11) chose to end the preface of her book on neonatal intensive care-“Human nature
strained to its utmost yet getting through alive, then turning its back on one success to pursue
another more arduous still-this is what inspires us.” For a discussion of this triumphalist
attitude with regard to new reproductive technologies see Layne 1992.
19. One of the reviewers drew my attention to the fact that Glaser and Strauss 1966:24,
1968 discuss “dying trajectories” and the problems for nurses, family, physicians, and
hospital administratorswhen patients do not follow a lineartrajectory of decline. Fagerhaugh
and Strauss 1977 discuss “simple pain trajectories” that typically follow “routine surgery”
and which the staff deem unproblematic and “complex trajectories” that are more common
with chronic conditions and multiple disorders and which create many problems for the
wards.
20. Goffman (1961) describes “the career of the mental patient” as falling “popularly
and naturalistically into three main phases: the period prior to entering the hospital, the
prepatient phase; the period in the hospital, the inpatient phase; the period after discharge
from the hospital, should this occur, namely, the ex-patient phase.” He observes in a note,
however, that this simple linear narrative is “complicated by the somewhat special experience of roughly a third of ex-patien-amely,
readmission to the hospital, this being the
recidivist or ‘repatient’ phase” (1961: 131). Goffman values the concept of career for its
“two-sidedness.”
2 1. This model of patient “progress” is not unique to neonatal care. The writing of the
physician’s “daily progress note is a tradition practiced . . . in hospitals and clinics across
the country” (Poirier et al. 1992:11-12). In Poirier et al.’s literary analysis of a patient’s
medical chart they note that social workers are “required to have a formal assessment in the
“HOW’S THE BABYDOING?”
645
medical chart within five working days of the day of admission, including a specific
discharge plan.” Apparently there is “a maxim in the profession .that ‘discharge planning
begins on the day of admission’. . . . In narrative terms, [the social worker] must posit an
ending to the story of the patient’s stay in the hospital even as it begins” and it should be a
happy one (Pokier et al. 1992: 15). Henig and Fletcher 1983: 121 report that nurses in the
intensive care nursery on which they base their book use this same maxim. As one reviewer
pointed out, this sense of progress is also inherent in Parson’s (1951) “sick role” in which
the patient is expected to work to recover.
22. See Croissant 1994 for an analysis of the evolutionary model in popular models
of motor development.
23. As Gillis (1994 14-15) has noted. since the 1960s. “as collectiveforms of memory
decline an increasing burden is placed on the individual. . . .Never before has so much been
recorded, collected; and never before has remembering been so compulsive.” In families “it
is wives and mothers” who take odare given this responsibility.
24. Indeed, some babies do not develop at all (Layne 1992.1990, n.d.; Newman 1987).
25. According to Heimer and Staffen (1992637) “ ‘good’ parents. . .hear about minor
as well as major events in their baby’s medical course,” and as Pinheiro (personal communication, 1995) points out, this extra information sometimes makes prognosticating more
difficult.
26. In increasing order of severity: (1) head box or oxygen hood. which is simply a
plastic box placed over the infant’s head into which additional oxygen is sent; (2) nasal
canula; (3) CPAP (continuous positive airway pressure), a forced-airsystem that is delivered
through the nose with nasal prongs; or (4) an endotracheal or nasotracheal tube.
27. One popular guide for parents of premature infants includesachapter entitled “The
Hospital Roller Coaster.” in which Henig and Fletcher describe some of the most common
medical conditions that afflict premies (1983). They begin the chapter by describing how
“With Premies, anything can happen . . .just when you imagine your baby is out of the
woods, something wholly unexpected could arise and set his progress back for weeks”
..
(1 983:64).
Guillemin and Holmstrom report the use of the roller coaster metaphor among the staff
of the NICUs they studied in the context of “patient careers” or “clinical courses.” In
describing long-term patients, they say that in some such cases “their careers are marked by
an unpredictable roller coaster course of failures and revivals” (Guillemin and Holmstrom
1986:114).
28. Koenig and Casper drew my attention to this, as did Dr. Pmheiro.
29. According to King, “until about a half century ago the term ‘crisis’ was commonly
used in medicine. The word itself means a decision, a point of decisive change. At the crisis
the patient would either pass the danger point and get well or he would get worse and die”
(1982 166). This notion of crisis was central to the art of prognosticating, but is clearly most
useful in regard to certain diseases (febrile or infectious)that are thought to follow a standard
linear course. In Jasper’s case the crises were multiple and held no predictive value.
30. Small intracranial hemorrhages are quite common in very premature infants, but
in most cases they disappear without any long-term effects. In fact, were it not for
ultrasounds,these bleeds would go unnoticed. Much like the discoverylcreationof countless
miscarriagesvia early pregnancy tests that would otherwise go unexperienced (Layne 1992;
Sandelowski 1993). this technology is creating knowledge that is often of dubious benefit.
3 1. See Mesman 1994 on “prognostic uncertainty” with regards to grade-4 bleeds.
32. For the second time in the four days since Jasper’s birth we encountered something
that seemed to us as laypeople as extremely dangerous and frightening but that the medical
establishmentconsidered to be simple and safe. Like the pneumothorax, this brain surgery,
we were assured, was no big deal: a very simple procedure surgicallyand one with normally
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excellent results. In fact, according to the neonatologist, it is easier to do such surgery on
infant brains than on adult ones despite the diminutive size.
33. See Newman 1980, 1981, 1982, and 1986 for a discussion of “the social life and
sensory experience” of infants in isolettes, including a discussion of their interactionswith
parents and staff.
34. The intermediate nursery was described to us several times as “the place the babies
go when all they need to do is grow.” When Jasper went, however, he still had three tasks
to accomplishbefore he would be released: (1) he had to learn to eat or, more accurately, to
develop the strength to eat all his food, rather than receive nourishment via tube; (2) he had
to learn to control his temperature; and (3) he had to be “weaned” off all medications. On
July 15 both my husband and I came down with the flu, and for the fmt day since his birth
neither of us were able to visit Jasper in the hospital. It was on this day that Jasper graduated
to intermediateand I was crushed that I had not been there to see it. Guilleminand Holmstrom
1986 117-1 18 describe one case in which a child was sent to the intermediatenursery not
to grow but to die. This was a difficult, long-term case in which the NICU staff never could
bring itself to withdraw treatment. After months of ambivalence, the staff resolved the
problem by dischargingthe infant to a level-2 unit in the samehospital where it was“exposed
to greater risk due to less stringent surveillance.” The baby died after 27 days.
35. This use of the metaphor of graduation is not unique to the Albany Medical Center
NICU. In their book Parenting Your Premature Baby, Jason and Van Der Meer use the term
both in the context of moving to an intermediatecare nursery (198984) and in terms of
leaving the hospital for home; the title of one of their chapters is “Graduation Day-Taking
Your Baby Home”( 1989 159). Avery and Litwack (1983:61) include a photo of the bulletin
board,much like that found at Albany Medical Center from which “snapshots of nursery
‘alumni’ cheer the parents (and caretakers) of the present occupants as they fmt enter the
nursery.” (See also Henig and Fletcher 1983:187.)
36. The metaphors of the NICU as a school and the baby as a studentwere also apparent
in other ways. Once when I called to check on Jasper the nurse caring for him was on break.
Another nurse looked at his chart and reported “no extracurricular writing on here [i.e.. on
the flow sheet]. Looks like he’s being a good boy.”
37. In reviewing Jasper’s medical records in preparation for writing this paper, I
discovered a series of forms called “premature infant parenteral nutrition order sheets” and
was surprised to learn that even in those earliest, most uncertain days, he could be seen to
be “making progress’’ in this domain; sheet after sheet shows ever larger numbers for things
like volume of “standard electrolyteoptions” in addition to “electrolytes supplied by amino
acid solution” and “rate of infusion” as well as “the milliliter per kilogram per day rate.”
This “progress” was invisible to us though.
38. Just as we had simplified his condition by focusing on his respiratory system, her
question highlights a lay understanding (and probably previous medical model) that privileged weight gain as a sign of improving health. People tell me that in the old days, babies
had to weigh 5 pounds before being released from the NICU. Now, judging from our case,
the decision is based on certain physiological abilities rather than weight.
39. He continued to “improve steadily” for a while. On June 25 he was moved back
to an isolette and given pedialite through his feeding tube which he tolerated. The next day
he was started on breast milk again (June 26.4ccs bm) and in a few days had his very first
bottle (June 29). On July 1 he nursed for the Wrst time. But then on July 2. when I called at
400 A.M., I learned from the night nurse that he had started to have decelerationsagain and
had quite a bit of aspirates, and that his head circumferencehad increased .5 mm again. The
infection was back. Another “setback.”
40. We have given each of our sons two godmothers.
41. The adjective rocky means both “inclined to rock, or sway” and “full of obstacles
or difficulties” (as in full of or containing rocks). Several of the meanings of course pertain
“HOW’S THE BABYDOING?“
647
to nautical matters: “the direction in which, or point of the compass towards which, a ship
sails,’’ “each of sails attached to the lower yards of a ship” (OED).
42. In this sense the common notion that disease or illness is, like a natural disaster, a
force against which the brave individual must heroically struggle (or “battle”) seemed apt
(cf. Hawkins 1993).
43. An electronic word search in The New Grolier Multimedia Encyclopedia (1993)
for instances in which disease and course appear in the same paragraph located six entries
that referred to the course of a disease, often on more than one occasion.
44. This omission is not corrected in the 1993additions to the OED.
45. According to Sacksit was Hippocrates who introduced “the idea that diseases have
a course, from their fmt intimations to their climax or crisis, and thence to their happy or
fatal resolution” (1985:vii). The notion of “course of disease” is intimately connected with
the idea of “prognosis” defined in the International Dictionary of Medicine and Biology
(Becker 19862310) as “an informed judgement of the course and probable outcome of a
disease based on a knowledge of the facts of the particular case.” The Hippocratic writers
are credited with the development of the art and science of “prognosis” in the treatise
Prognostic and in some ways more importantly in Epidemics, where ‘‘a number of detailed
case-histories” that describe “the daily progressof a particular patient’s illness” are recorded
(Lloyd 197056; cf. King 1982165-166, Siraisi 1990:l-2.134-135).
According to Siraisi. in Medieval and early Renaissance Europe “the prediction of the
course and outcome of disease was an important aspect of the physician’s skill. In a medical
system in which diagnosis was often problematic and the ability to cure was very limited,
prognosis must frequently have emerged as the most valued and actually most useful aspect
of medical attendance for both practitioner and patient” (1990: 133).
It is still an open question as to when the use of the term “course” entered medical
discourse in this way. Presumably the sense of this usage is l i e d to the more general notion
of “the course of nature . . .especially in regard to its constancy or regularity” (OED) or is
an analogic use of the term life course; life is a journey and in this case the life in question
is that of a disease.
46. One usage Guillemin and Holmstrom report is that “the n.i.c.u. staff sometimes
started the parents on a course of grieving before their infant died” when they believed the
baby’s death was inevitable (1986 154). This usage references both the linked “journey” or
“course” of intimate onlookers and the medicalhation of grieving-the standardized, five
stages of grief delineated by Kubler-Ross (1969) through which normal grievers are
expected to go. For instance, they describe how occasionally, with “ligering cases,’’ the
staff would decide to “withdraw support and allow disease to take its course” (1986 148).
47. The OED gives examples from a 1801 medical journal, “I wished . to put him
on a course of chalybeate tonics,’’ and from an 1891 issue of the Illustrated London News,
“the ‘course’ is usually fifteen douche-baths and five tube-bathes.”
48. King’s (1982146-164) distinction between the clinical entity and the disease
entity is the inverse of my own.For King (1982: 152). the “clinical entity remains relatively
constant” through history, as in the case of Hippocrates description of puerperal fever. By
disease entity he refers to our“knowledge-about”disease,which“accumu1ates”and changes
over time (1982:150). According to Coe (197099). physicians sometimes use the term
“subclinical course” to refer to a disease about which the affected individual is not aware
and therefore mns its course outside of a clinical setting.
49. See Hunter 1986 for a discussion of the way that anecdotes serve to bridge this gap
in medicine as well.
50. Modell’s study of an in vitro fertilization clinic suggests that there may be
differencesbetween specialties in terms of the extent to which statisticalversus case-by-case
analysis is privileged. The reproductive endocrinologists she studied “utilized a statistical
meaning of odds”to assess the effectiveness of their techniques and success of their progmn
..
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(1989: 129). According to Modell, these physicians felt that patients’ efforts to “beat the
odds” with assertions like “ ‘I will be the 1 out of 4‘ ” indicated“naivete and lack of realism”
(Modell 1989: 130). Modell understands that this discrepancy between the way doctors and
patients utilize and interpret statistics can be explained in part by the fact that patients see
in vitro as an “experimental procedure” whereas the medical personnel do not ( 1987: 12,13).
If this is the case, it may explain why-case-by-case analysis is so important in neonatology,
which clearly self-defines as an experimental field.
5 1. This is a new and increasingly popular genre. Hawkins analyzed over one hundred
such books that had been published in the United States in the last 30 years.
I take issue with Hawkins’s conclusion that, unlike the common metaphor of illness as
battle which “is syntonic with many of the constructs of medicine, the journey metaphor
. . .tends to be if not medically dystonic, certainly medically irrelevant” (1993:88-89). In
fact, via the notion of “course,” the journey metaphor or myth permeates medical discourse.
52. See Becker 1994396398 and Layne 199073-76 on limbo.
53. Anspach found that 34 percent of all life-and-death decisions concern infants who
have an uncertain prognosis. The problem of making life-and-death decisions in such
circumstances, “in the absence of sound information concerning the future of the infant
whose fate is being decided,” has, according to Anspach, become “emblematic of neonatal
intensive care as an enterprise” (1987:216). She observes that “(b]ioethicists . . . have
focused on cases which are ethically complex but prognostically simple. But actual cases
encountered in the intensive care nursery are frequently complex from the standpoint of both
prognosis and ethics” (1987:77).
54. In addition to Sosnowitz’s study, several other authors discuss the confusion that
may arise from doctor-patient communication. Hancock found that sometimes parents’
“distorted expectation” were “based on fragmentary information because the young doctor
had withheld information about the baby’s condition” (Hancock 1979:432). Clyman et al.
(1979) found that what doctors tell parents about the condition of their child systematically
differs from what they actually believe. See also Avery and Litwack (19839-10) on the
“communication gap between parents and hospital personnel” in NICUs.
55. See also Brazelton 19828-7
on denial and for a somewhat different version of
“five stages” that “parents have to go through before they finally get to the point of being
able to make an attachment to their premature infants.”
56. It is also important to remember that cultural studies of risk suggest that what is
experienced as “unbearable insecurity” is at least in part culturally constituted. Whereas,
unlike the “risk aSfessors” and “risk handlers” in the nuclear power industry described by
Perin (1994). neonatologists and parents are both “risk handlers” of a sort. Yet, both that
which is at risk and the way risk is handled may differ significantly among these actors. A
provocative comparison could be made between the way that “certainty” is established in
these two “high hazard” fields.
57. We know that in cases of medical uncertainty, attending physicians, residents, and
nurses prognosticate differently (Anspach 1993). It would not be surprising to find that when
parents prognosticate that they too attribute different value to certain types of evidence. See
Glaser and Strauss 1966 on the different types of information that dying patients and their
nurses use to prognosticate.
58. Landsman (1994) is now undertaking an interpretive analysis of the ways that
women come to understand themselves as the mothers of infants with disabilities. Although
her study does not take place in a NICU, most of the infants in question spent time in a NICU.
59. See Glaser and Strauss 1966 for a discussion of the prognosticating practices of
nurses and patients in the context of terminal illness.
60. Practitioners may also fall prey to the seductiveness of these narratives and share
with the public the expectation that they should uniformly be able to craft narratives with
happy endings (Poirier et al. 1992: 17).
“HOW’S THE BABYDOING?’
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