SE M I N A R S I N P E R I N A T O L O G Y ] (2015) ]]]–]]]

Available online at www.sciencedirect.com

Seminars in Perinatology

www.seminperinat.com

Ethical challenges in the new world of

maternal–fetal surgery
Ryan M. Antiel, MD, MA
Department of Medical Ethics and Health Policy, Perelman School of Medicine at the University of Pennsylvania, 423
Guardian Dr, FL 14 Market St, Suite 320, Philadelphia, PA 19104

article info abstra ct

Keywords: This article explores some of the complex ethical challenges that exist in the field of fetal
Fetal diagnosis diagnosis and treatment, especially surrounding maternal–fetal surgery. The rise of these
Fetal treatment new treatments force us to reconsider who or what is the fetus, what are our obligations to
Maternal–fetal surgery the fetus, and what are the limits to those obligations. In addition, we will consider
Ethics provider and professional biases, disability issues, and how maternal–fetal surgery has, for
a select group of women, changed the very experience of motherhood.
& 2015 Elsevier Inc. All rights reserved.

Fetal diagnosis has always been medically complex and
ethically controversial. Rapid advances in molecular genetics
and advanced imaging technologies have given clinicians an
unprecedented look into the womb. Until recently, however,
advanced diagnostics were used primarily for decision-
making around pregnancy termination and preparing for
postnatal treatment. But now a selected group of women
have a third option. What was once considered, science
fiction has become a reality—surgery on the fetus. Harrison
et al.1 at the University of California, San Francisco pioneered
open fetal surgery in the 1980s. The theory was simple: if an
intervention for congenital anomalies took place prior to
birth, one might be able to cure, or at least mitigate, the
negative consequences that would be inevitable if surgery
was delayed until the fetus was delivered.
The pace of medical and social developments in this arena
is dizzying. Consider that in the early 1980s standard treat-
ment was withheld from more than half of infants with a
myelomeningocele.2 After the Baby-Doe controversy, postna-
tal treatment of spina bifida came to be understood as
mandatory.3 And today eligible women are offered prenatal
repair of their fetus’ myelomeningocele.4 In the wake of
these rapid societal shifts precipitated by technological
advancements, a new set of ethical challenges has surfaced.
For what is both morally important and problematic, is
precisely that the procedure is not, properly understood,
“fetal” surgery. It is more appropriately termed “maternal–
fetal” surgery: both the fetus and the mother undergo
surgery. Significantly, such a surgery poses physical harm
and offers no direct physical benefits to the mother.
The purpose of this article is not to provide an overarching
ethical framework to guide prenatal decision-making.
Instead, my aim is far less ambitious: to provide an overview
of some of the major ethical questions that underlie the
challenges for the physicians face when caring for pregnant
women and ill fetuses. Questions such as: who is the patient
(the pregnant woman, the fetus, or both) and how ought we
navigate the tradeoffs, which invasive procedures yield each
individual? Are there specialty-specific biases and commit-
ments that unduly influence the counseling process? How
have fetal diagnostics and interventions changed the very
experience of motherhood? Is the risk of fetal death associ-
ated with maternal–fetal surgery for nonlethal conditions
discriminatory against people with disabilities? And finally,
should pregnant women be obligated to undergo surgery in
order to benefit their fetuses?

E-mail address: antiel@mail.med.upenn.edu

http://dx.doi.org/10.1053/j.semperi.2015.12.012
0146-0005/& 2015 Elsevier Inc. All rights reserved.
2 SE M I N A R S I N P E R I N A T O L O G Y
But who is the patient?
The majority of fetuses prenatally diagnosed with congenital
anomalies now have a physician monitoring them before
they are born. With evolving technology, many diagnosed
fetuses are not just monitored but also undergo treatment in
utero. These treatments vary from minimally invasive blood
transfusions for fetal anemia to more invasive fetoscopic
procedures for twin-to-twin transfusion syndrome to open
surgical repairs for spina bifida. In this current age of
medicine, most would argue that the fetus has become a
patient.5
McCullough and Chervenak6 explicate the fetus as patient
idea.7,8 They strategically bypass any discussion about fetal
personhood given the deep-seated metaphysical disagree-
ments surrounding the moral status of the fetus. Instead,
they focus on the concept of patienthood. The previable fetus
becomes a patient, they argue, when (1) the mother presents
her to the physician and (2) when there exists a clinical
intervention to benefit the fetus. They argue that the fetus
has no intrinsic moral status but rather a “dependent moral
status,” which is conferred upon the fetus only when the
pregnant woman presents the fetus to the physician. In this
paradigm, the status of the fetus as patient is only ever
contingent: if the mother desires the fetus to be viewed as a
patient, her “thinking makes it so.”9 The physician does have
beneficence-based obligations to protect and to promote the
best interest of the fetus but only if it is brought to her. They
reject that fetal patienthood necessarily implies that the
pregnant woman and fetus are separate patients.
On the other hand, Lyerly et al.10 argue that fetal patient-
hood will encourage viewing the pregnant woman as simply
the fetal environment, thus obliterating her own identity. The
authors acknowledge that both physicians and pregnant
women have beneficence-based obligations toward the fetus.
They cite taking prenatal vitamins to prevent birth defects as
one example. Yet, they believe that the “concept of fetus as
patient” will animate conceptualizations of the fetus and
pregnant woman as two separate patients. This could result
in physicians regarding “their obligations to and the value of
each of their patients as equal.” Instead, Lyerly et al. argue for
a single patient, the pregnant woman.
This emphasis on symbiosis is helpful for a field marred
with a feto-centric history.11 Fetuses are not separable from
pregnant women. Yet, the fetus is also not reducible to the
pregnant woman—not merely an extension of her flesh
analogous to a kidney. Rich12 describes the fetus as “some-
thing inside and of me, yet becoming hourly and daily more
separate.” Young13 recollects fetal movements as “belonging
to another, another that is nevertheless my body.” Under-
standing pregnancy as a separate existence or as a single
existence fails to accurately account for the phenomenon at
hand. Pregnancy is experienced as “the splitting of the
subject: redoubling up of the body, separation and coexistence
of the self and another.”14
Lyerly et al.10 take a surprising turn when they insist on
self-sufficiency and detachment as prerequisites for patient-
hood. The “paradigmatic patient” is one who is “fully sepa-
rate from others.” Defining the “paradigmatic patient” in such
] (2015) ]]]–]]]
a way may protect the normative asymmetry Lyerly is
arguing for—the primacy of the clinician’s duties to the
pregnant woman—yet the definition itself is problematic.
The concept of the patient as a self-sufficient, independent,
and fully autonomous being is an illusion, the byproduct of a
post-enlightenment, patriarchal American culture. What
makes certain decisions in medicine so difficult and often
heartrending—whether parents should stop life-sustaining
treatment for their baby in the NICU, whether a sister should
donate a kidney to her younger sister, or whether your father
with advanced Alzheimer’s disease should undergo surgery
for his newly diagnosed cancer—is that we are intimately
connected to others. Yet, the overarching framework of
discussions on personhood, and now patienthood, is obses-
sively individualistic. The particular emphasis on separate-
ness does violence to the moral and emotional commitments
that arise out of intimate relationships.
Debates over personhood, and now patienthood, are con-
troversial because they are often seen as the basis of morality.
We believe that persons, and patients, deserve to be treated in
certain ways. It is thought that if we can determine the
capacities or criteria that constitute personhood (or patient-
hood), then we will know who is worthy of fundamental rights
and our moral respect. Lindemann15 takes the opposite
approach. She argues that personhood is something that we
do. Someone is not a person because I think she is a person, but
rather because I treat her as a person. Thus, personhood, and I
would argue patienthood, is dependent on a moral community
recognizing and responding to the other. And for many
women, pregnancy is the very active process of beginning to
initiate the fetus into personhood. Lindemann writes:
In nonhuman animals, for all we can tell, pregnancy is a
process that, occurs in the female without any purposive
contributions on her part: she passively suffers the fetus
to grow in her rather than actively, shaping it, so the
relationship that ensues is a purely biological one. In
human pregnancies, by contrast, what begins as a purely
biological, relationship is transformed into a recognizably
human one because, by what the woman does in word,
deed, and imagination, she calls, her fetus into person-
hood. She now not only bears the identity of a pregnant
woman but also becomes a particular kind of pregnant
woman: she is an expectant mother.
The decision to undergo maternal–fetal surgery is not prem-
ised on whether the fetus is a person, but rather it depends on
our attitude toward the fetus, perceptions of ourselves as
parents, and the belief that medical interventions are one form
of caring for children and even our future children. Hauerwas16
writes, “We seldom decide to treat or not treat (someone)
because they have or have not yet passed some line that makes
them a person or nonperson. Rather, we care or do not care for
them because they are Uncle Charlie, or my father, or a good
friend.” A fetus is a patient because we treat her as a patient.
Tradeoffs
Despite great advances in obstetrical care, pregnancy is risky.
Pregnant women are at increased risk for both morbidity and
 SEM I N A R S I N P E R I N A T O L O G Y
mortality. The most common causes of morbidity in preg-
nancy are pregnancy-induced hypertension, hemorrhage,
and pulmonary embolism.17 Furthermore, over 20% of preg-
nant women are hospitalized before delivery due to a com-
plication.17 Fortunately in most circumstances, the well-being
of the pregnant woman and the fetus overlap. Yet there are
extreme circumstances where divergences do occur. Specifi-
cally, fetal interventions can create situations where the
clinical best interests of the fetus and the mother are not
aligned, where potential benefits for the fetus are attainable
only by risking serious morbidity for the mother.
Significant short-term and long-term maternal risks are
involved with open fetal surgery.4 When a woman undergoes
fetal surgery, she must have two operations: the first to repair
the fetal defect and the second to deliver the fetus. She has
committed herself to future cesarean sections for all subse-
quent pregnancies, as the hysterotomy puts her at risk for
uterine dehiscence or rupture, either of which could be fatal.
If a woman has an amniotic leak from the incision, she is
required to undergo strict bed rest for the remainder of the
pregnancy. In addition to complications from the hysterot-
omy, there are also side effects from the medications
attempting to prevent premature labor after surgery. Fortu-
nately, there have been no maternal deaths after open
maternal–fetal surgery, although it is a theoretical risk. No
good studies currently exist on the long-term reproductive
health of women who undergo maternal–fetal surgery. In a
recent survey of 93 patients who had undergone open fetal
surgery, of which only half of the women responded (47 of
the 93 women), 27 (57%) reported one or more subsequent
pregnancies after open maternal–fetal surgery.18 Among
these 27 women, 10 (37%) had uterine rupture or dehiscence
and 2 (7%) had excessive bleeding. One cesarean hysterec-
tomy was reported. Reported infertility rates were not above
baseline population rates. However, these results are subject
to selection bias.
The benefits to the future child are of course dependent on
what disease is being treated. Fetal hydrops secondary to
congenital cystic adenomatoid malformation or sacrococcygeal
teratomas can be fatal. So in these cases, the possible benefit to
the fetus is life. In the case of maternal–fetal surgery for spina
bifida, the benefit is decreased disability. The Management of
Myelomeningocele Study (MOMS) was a multi-center, random-
ized controlled trial that compared prenatal repair with stand-
ard postnatal repair of myelomeningocele.4 Prenatal repair
reduced the need for a cerebrospinal fluid shunt at 12 months
and improved motor function at 30 months.
During open fetal surgery, significant risks for the fetus are
also posed. Even in the most experienced hands, the risk of
fetal death is between 3% and 6%.4,19 And most fetuses will be
born prematurely. One neonatologist has commented that we
have in essence developed a device to create prematurity.20
The risks associated with prematurity include respiratory
distress, cardiovascular disease, injury to the bowels, immu-
nologic compromise, hearing and vision problems, and neu-
rological insult.21 In the MOMS trial, 33% of the prenatal group
were born between 30 and 34 weeks, and 13% were born less
than 30 weeks.4
But how are pregnant women to weigh these tradeoffs? We
generally think that the risks to the pregnant woman must be
] (2015) ]]]–]]] 3
proportional to the potential benefit for the future child. And
we must also weigh the potential morbidity benefits for the
future child with both the risk of death and the risks of
prematurity. Is it preferable to have a full term baby with
hydrocephalus or a 24-week premature infant without
hydrocephalus?
The risk of a surgery may be worthwhile if the benefit is
commensurable with the risk, but what scale can accurately
weigh and measure such things? When two things are said to
be commensurable, there exists a common criterion to
measure them by.22,23 Commensurable items can be ranked.
John is 5 in taller than Bill. In contrast, things that are
incommensurable lack a common unit of measure. They
may be comparable—for example, I can compare jazz music
with Baroque music. But what calculus exists to rank these
genres? In a similar way, the choice to undergo maternal–
fetal surgery cannot simply be decided by a scale weighing
the risks and benefits. McIntyre writes:
The characteristic temptation of the modern world is
utilitarianism. For utilitarianism in all its versions aspires
to provide a criterion, a way of judging between rival and
conflicting goods to maximize utility. But the goods and
rights, which define our contemporary conflicts are
incommensurable. There is no higher criterion. There is
no neutral concept of utility.24
Given the incommensurability of competing factors, we
should expect a broad spectrum of prioritization by individual
women and individual physicians.
Does who counsels matter?
A specific patient is cared for by a specific provider who
brings her own values, knowledge, and practices to the care
of patients; these factors shape the care that is provided. This
clinical reality raises the concern that a pediatric-based
model of fetal care, in contrast to an obstetrics-based model,
will be primarily concerned with the health and well-being of
the fetus in contrast to the well-being of the pregnant
woman.25 It has been assumed that high risk obstetricians
will primarily focus on maternal risks, whereas pediatric
neurosurgeons will focus on shunt rates and neonatologists
will focus on prematurity to the exclusion of other consid-
erations. This may be true and simply a function of the
specialization and niche expertise common in medicine
today. Neurosurgeons have no experience with the side
effects of tocolytics, and obstetricians have never taken care
of a child with spina bifida or managed a cerebrospinal fluid
shunt. In short, our specialization precludes us from seeing
the whole picture. Additionally, some are concerned that
pediatric-based models of fetal care will not present termi-
nation as a viable option and encourage women to bring to
term pregnancies with disabilities.25 In contrast, others have
argued that obstetric-based counseling for congenital defects
like spina bifida is grossly slanted against disability and in
favor of termination.26 They argue that obstetricians, who
have no experience caring for any children with disabilities,
present inaccurate and worst case scenarios to the
pregnant woman.
4 SE M I N A R S I N P E R I N A T O L O G Y
Interestingly, at fetal care centers, specialty bias seems to
diminish. Put another way, at fetal care centers, physicians
from all specialties appear to be quite uniform in their
recommendations. In 2010, Brown et al.27 surveyed both
maternal–fetal medicine specialists as well as pediatric spe-
cialists who practiced at fetal care or fetal treatment centers.
Although maternal–fetal medicine practitioners were more
likely to support the termination of a pregnancy with spina
bifida than pediatric specialists (54% versus 35%), there was
not a significant difference between the groups in the like-
lihood of recommending open maternal–fetal surgery. Why is
this? It may be that fetal treatment centers self-select
physicians who collectively view maternal–fetal surgery pos-
itively. I would also argue that, in order for maternal–fetal
surgery to be successful, it requires highly specialized practi-
tioners from multiple disciplines to work together as a team.
This team of obstetricians, surgeons, neonatologists, and
other healthcare providers meet together at the end of a
woman’s comprehensive evaluation to discuss the case and
will often meet as a team with the patient. The emphasis on
teamwork in medicine is not a new concept. In 1910 Mayo,28
surgeon and cofounder of the Mayo Clinic, said, “In order that
the sick may have the benefit of advancing knowledge, a
union of forces is necessary.” Inter-specialty collaboration
will lead to a heightened awareness of factors one may not
normally consider, temper individual bias, and result in more
uniform recommendations.
How did we get here?
A striking dichotomy exists. For one pregnant woman, physi-
cians go to extreme efforts and accept serious risks in hopes
of improving the quality of life of the future child. On the
other hand, the majority of fetuses diagnosed with anomalies
such as spina bifida are terminated. A surgical colleague
recently overheard a conversation I was having about a
particular maternal–fetal surgery. She interjected that she
could not figure out why anyone would go to such lengths
when they could simply abort and “start over.”20
As alluded to above, the evolution of maternal–fetal surgery
was contingent upon the ability to provide timely and
accurate prenatal diagnosis. Our ability to diagnose has
dramatically improved due to technologies such as amnio-
centesis, chorionic villus sampling, high-resolution ultra-
sound, ultra-fast MRI, and fetal echocardiography. The
evolution of these technologies has provided women and
their partners with new choices. But more choice yields
heavy burdens. Smajdor29 writes about the connection
between ultrasound and maternal–fetal surgery and the more
general connection between data and the “urge to intervene.”
It is interesting to consider how this “urge to intervene” alters
the very nature of parenthood, in particular, motherhood.
When our screening technologies catch an abnormality, our
first instinct is to want to do something: to fix or treat the
problem.
Historically, there has been only one “treatment” available
at the time of diagnosis: termination. In her important and
thought provoking book, The Tentative Pregnancy, Barbara Katz
Rothman argues that prenatal screening has turned
] (2015) ]]]–]]]
pregnancy into a production instead of a relationship.30 Many
women postpone bonding with their fetus until they have
been reassured that it is not defective—thus the “tentative
pregnancy.” The sort of preparation and bonding that a
pregnant woman actively engages into begin to welcome a
fetus into her familial and social narrative is put on hold. She
writes:
We ask the mother and her family to say, in essence,
“These are my standards. If you meet these standards of
acceptability, then you are mine and I will love and accept
you totally. After you pass this test.”
The pregnant woman and fetus are thus viewed as separate
individuals whose relationship is chosen and contingent. Yet
these diagnostic tests only give the illusion of control. No test
can guarantee a perfect child. Rothman writes:
One can rationally decide to abort a fetus with spina bifida
because life in a wheelchair is not acceptable—and then
have a baby’s back broken in a car accident … Does the
conscious, deliberate emphasis on control and “standards
of acceptability” prepare us for the reality of parenthood?
And, if developmental psychology has shown that uncondi-
tional acceptance of a child is foundational for successful
parenting, what implications does the “tentative pregnancy”
have for the future difficult and life-long task of parenting?
While the majority of women choose to terminate the
“diagnosed fetus,” others have turned to intrauterine treat-
ment, which may equally alter the meaning of motherhood.
If prenatal diagnosis and selective abortion have created
the “tentative pregnancy,” the option of fetal intervention
does the opposite. The dramatic self-sacrifice we associate
with parenthood begins much earlier for these women.
Pregnant women who choose to undergo maternal–fetal
surgery are forced to make maternal decisions before birth.
There may be disagreement about the type of sacrifices we
present to women and the societal pressures to make those
sacrifices, but the new world of maternal–fetal surgery has,
for a select group of expectant mothers, accelerated
motherhood.
Disability rights critique
Fetal surgeon Alan Flake writes that “maternal–fetal surgery
is a specialty born of clinical necessity.”31 The first applica-
tions of maternal–fetal surgery were to prevent prenatal or
neonatal death. But now maternal–fetal surgery has been
extended to nonlethal anomalies, such as myelomeningocele.
This raises an important question. What “clinical necessity”
exists in nonlethal cases to justify the considerable risks to
the healthy young mother and the small, but real, risk of fetal
demise? The risks assumed are for the hope of decreasing
disability.
Disability rights scholars have criticized prenatal genetic
screening and selective abortion as immoral and misin-
formed.32 One argument critics make against aborting an
otherwise desired fetus because she has spina bifida is that it
is insulting to people who currently live with spina bifida. The
message conveyed by aborting a fetus with a disability is that
 SEM I N A R S I N P E R I N A T O L O G Y
these individuals are unworthy of being born.33 It is an attack,
however oblique or unintended, on the humanity of people
with spina bifida. Furthermore, critics argue that many
pregnant women and the physicians who counsel them have
misinformed views of what life with a disability is actually
like. A study of parents of children with spina bifida and their
pediatricians found that the pediatricians overestimated the
negative impacts while simultaneously underestimating the
positive impacts of caring for a child with a disability.34
It is beyond the scope of this article to adequately present
the various disability rights critique of prenatal genetic test-
ing in full detail or to assess responses to those critiques.
Instead, I am interested in examining whether maternal–fetal
surgery is subject to the same criticisms as selective abortion.
Somewhat paradoxically, many women who are strongly
opposed to selective abortion have nevertheless risked fetal
death by undergoing maternal–fetal surgery to decrease
disability in an otherwise nonlethal condition (i.e., spina
bifida). Lyerly11 argues that this is problematic. If prenatal
genetic testing spawns the “urge to intervene,” is intervening
through maternal–fetal surgery discriminatory in the same
way many view selective abortion?
Lyerly raises a thought provoking consideration. I have
witnessed women, albeit a minority, decline maternal–fetal
surgery because they viewed the risk of fetal demise to be too
high. There is a theoretical risk of death with any surgery.
This begs the question, how high of a risk is too high? An
individual’s assessment of risk is influenced by many biases
such as risk aversion, omission bias, and how the risk is
framed.
But is the motivation for fetal intervention the same as that
for selective abortion? In other words, should we view
maternal–fetal surgery as an attempt to “fix the broken gift,”
reflective of a qualified acceptance of a child? Important
differences exist between selective abortion and maternal–
fetal surgery. Selective abortion “treats” the disability by
eliminating the diagnosed fetus. The mortality rate of selec-
tive abortion is 100%. In contrast, as cited above the fetal
mortality rate for prenatal spina bifida repair is approxi-
mately 5%. Suggesting that these two interventions are
equally discriminatory toward those with disability seems
very problematic. Yet, it remains debatable what constitutes
a justifiable mortality tradeoff for a morbidity benefit.
Furthermore, maternal–fetal surgery for spina bifida is not
a cure. Unless there is a fetal demise during or after the
surgery, the woman has accepted to care for a child with a
disability. The disability may be lessened as a result of
intervention, but the disability remains. One woman shared
her motivation to undergo maternal–fetal surgery stating that
her future child would face many difficulties because she had
spina bifida, should not she (the expectant mother) do every-
thing possible to make her child’s life just a little easier?20
A related but different dilemma is the potential for mater-
nal–fetal surgery to save the life of a fetus that would
otherwise die, resulting in the child living with severe
disability. The best example of this dilemma is prenatal
tracheal occlusion for congenital diaphragmatic hernia
(CDH). This treatment is currently under investigation for
fetuses with severe and likely fatal CDH. The problem is that,
while the treatment offers a mortality benefit, these babies
] (2015) ]]]–]]] 5
have severe disability secondary to their CDH. Some physi-
cians have stated that it would be better not to intervene and
simply let “nature take its course” than to ensure that the
child will live and suffer. As prenatal surgery continues to
evolve, it is crucial for practitioners to work out appropriate
limits to our technology. Knowing when to intervene and
when to let be is one of the most difficult decisions for
parents and practitioners to make.
Obligatory or supererogatory
While society understands parents to have an obligation and
responsibility to care for their children, oftentimes parents
exceed normative parental duties. The ethics of these super-
erogatory actions give rise to the debate over whether expect-
ant mothers who choose to continue their pregnancy are
obligated to undergo prenatal interventions for the good of
their future child. Is it unfair to the future child to decline
prenatal surgery? These questions fall within a larger—and
largely contentious—debate about obligations toward the
fetus. Pregnant women who chose to continue their preg-
nancy do have beneficence-based obligations toward the
fetus.10 But what becomes controversial is compulsory treat-
ment when a pregnant woman either refuses to undergo a
treatment recommendation (cesarean delivery for fetal dis-
tress) or rejects medical recommendations (continuing to use
illegal drugs). The American College of Obstetricians and
Gynecologists (ACOG) Committee on Ethics argues strongly
against the use of coercive or punitive means in these
difficult situations.35 Regarding the use of force in the setting
of maternal–fetal surgery, a joint statement by ACOG Com-
mittee on Ethics and the American Academy of Pediatrics
Committee on Bioethics contends that “even the strongest
evidence for fetal benefit would not be sufficient ethically to
ever override a pregnant woman’s decision to forgo fetal
treatment.”36 Even if the vast majority of physicians and
ethicists agree that forcing a woman to undergo maternal–
fetal surgery is never justifiable, it is important to explore
what internal or external pressures (from family, community,
or even one’s physician) might make it nigh impossible to
forgo maternal–fetal surgery.
Consider the following two examples: a mother pleads with
the doctors to allow her to undergo fetal surgery to repair a
recently diagnosed spina bifida. “I would give my right arm if
it would help my baby,” she tells the doctors. But she is not a
candidate—her BMI is too high. Another pregnant woman is
carrying a fetus with the same diagnosis. After two days of
comprehensive testing and consultations, she is told the
“good news”—she is a candidate; however, she hesitates.
After a few days of deliberation, she declines. She tells the
nurse coordinator that she does not want a scar.
These two cases represent divergent views on motherhood
and the obligations that arise from the relationship. For the
first pregnant woman, there seemed to be no choice. In order
to be a “good mother,” consistent with her understanding of
what that meant, she ought to sacrifice for her future child
in this way. The fact that the gatekeepers would not offer her
an operation infuriated her. She felt as though the medical
team was restricting her autonomy and denying her the
6 SE M I N A R S I N P E R I N A T O L O G Y
opportunity to help her future child. The second pregnant
woman felt differently. She verbalized feeling a similar intu-
ition to undergo the surgery. She acknowledged both internal
(a good mother would be willing to do this) and external (my
family might think poorly of me if I do not have the surgery)
pressures to do so. She desired the pregnancy and was not
considering an abortion. Yet, surgery overwhelmed her. She
was prepared to make sacrifices in the future for her child, yet
this seemed to be asking too much of her. Thus, we are
presented with two women with divergent views of what was
required of them as expectant mothers. One woman felt the
obligation to do everything possible and the other understood
there to be some limits to what was required of her.
There are similar dilemmas in the field of living donor
organ transplantation. Is a father obligated to donate a kidney
to his daughter in end stage renal failure? Or is a sister
obligated to donate bone marrow to her younger brother
dying of leukemia? The transplant world’s response to these
dilemmas may be instructive to the field of maternal–fetal
surgery. First, the field has gone to great lengths to emphasize
that organ donation is a supererogatory act. Physicians
ensure that potential donors are given an “out.” In fact, some
physicians have even deceived families that a potential donor
is not a biological match if the potential donor fears that her
unwillingness to donate an organ will be met with disap-
proval and rejection. Although an ethical analysis of decep-
tion in this circumstance is beyond the scope of this article, it
is crucial to emphasize that maternal–fetal surgery is also
supererogatory. Furthermore, the future child’s best interest
is not the only interest to be considered. Many pregnant
women have other children or older parents that they care
for. Many pregnant women have demanding careers. It is
simply not feasible for every woman to move to another state
to be close to a given fetal center. Pregnant women and their
families have the difficult task of evaluating their own caring
resources and making a decision that is best for the family
unit. These decisions require a great deal of prudence.
The second lesson from the field of transplantation is to resist
the temptation to view a decision to sacrifice as pathologic or
coercive. With the rise of living donor transplantation, some
ethicists believe that we ask too much of parents.37 It was argued
that no parent could decline when presented with the option of
donating an organ to his or her child and that this was therefore
coercive at its core. Critics, in a similar fashion, have accused
maternal–fetal surgery of being coercive and undermining a
woman’s autonomy. There are at least two reasons for this
viewpoint. First, modern ethical frameworks, obsessed with
autonomy and free choice, have difficulty assimilating sacrificial
actions not based on risk aversion or self promotion.29 Second,
society has and in many ways continues to place undue
demands on mothers and pregnant women generally. Smadjor
believes that these conditions have made ethicists and physi-
cians uncomfortable with open maternal–fetal surgery. However,
the response to this discomfort has been problematic. Some
have proposed that medicine ought to construct barriers to
access and to protect pregnant women from themselves, a
subtle but gross form of neo-paternalism. Smadjor writes:
In essence, because our ideas of maternal altruism do not
fit into an autonomy-based ethics system, we are tempted
] (2015) ]]]–]]]
to exclude pregnant women from their place in that
system by a system of paternalistic restrictions … Perhaps
this encroachment of paternalism is a subversion of
medical ethics on a greater scale than the problem that
it is attempting to solve.
While difficult theoretical work must be done to demarcate
the limits of what prenatal interventions we will offer and to
whom, broadly dismissing the maternal desire to sacrifice for
her future child as merely the influence of coercive forces,
eradicates the human aspect of medicine. Yet, we must
maintain that fetal surgery, like organ donation or bearing a
child in the first place, is an extraordinary sacrifice. What one
ought to do in these situations is at best unclear.
Conclusion
More than 30 years ago, the editor-in-chief of the Journal of the
American Medical Association interviewed some of the leading
ethicists of the time, including theologian Richard McCor-
mick, about the ethics of maternal–fetal surgery.38 In partic-
ular, McCormick was asked about the legitimacy of letting a
diagnosed pregnancy go to term without intervening. McCor-
mick replied, “One wonders, when a successful treatment is
available to the individual couple, whether that is any longer
an alternative.” For some pregnant women with a fetal
diagnosis of spina bifida, there is no alternative. And I wonder
if surgery will become more compelling over time as treat-
ment becomes more successful: less invasive, better out-
comes. Others argue that the compulsion is problematic—
another example of the undue pressures that society already
places on women.
As I conclude this article, I acknowledge that it offers little
help for those dealing with these difficult dilemmas. Instead
of developing a framework to “solve” these dilemmas or
articulating a public policy proposal to guide future research
in the field, I have merely sketched out some of the funda-
mental questions that underlie our debates: who or what is
the fetus, what are our obligations to the fetus, and what are
the limits to those obligations. In the absence of any ethical
consensus, we are reminded how dependent medicine is on
underlying moral commitments. Divergent views exist
regarding parental decision-making, the purpose of having
children, the nature and perception of disability, and at what
point human life merits protection. The tension between
these perspectives—influenced by a plurality of moral tradi-
tions and commitments—gets played out in the arena of fetal
diagnosis and treatment.
The “urge to intervene” is gripping. The alternative—to
termination on the one hand, maternal–fetal surgery on the
other—has become less compelling to some. Yet, it is exactly
this alternative that requires important moral reflection. For
within a society dominated by a technological imperative, we
often lack the imagination to “do nothing gallantly.”39 We
must learn what kind of limits we should accept. Medicine
provides the opportunity for some parents to help their
children, and even future children, in extraordinary ways.
And the supererogatory maternal sacrifice of maternal–fetal
surgery, what some might call love, has certainly mitigated
 SEM I N A R S I N P E R I N A T O L O G Y
the suffering of many children. Yet, we must remember that
the ability of a woman to undertake the anticipated morbid-
ities of maternal–fetal surgery is very much dependent on the
larger family caring resources. There is no clear right or
wrong thing to be done. Medicine, like every worthwhile part
of our lives, involves tradeoffs. Maternal–fetal surgery is a
formidable setting where we might learn to sacrifice, to love,
and even to accept the limits that define the very nature of
our existence, of our finitude—“the rest is silence.”9
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