A 45-year-old woman presents to her obstetrician/
gynecologist’s office after testing positive on a home
pregnancy test. Her pregnancy is confirmed, and she
is scheduled for appropriate follow-up appointments.
At her 12-week ultrasound, the fetus is noted to have
some congenital abnormalities and what appears to be
anencephaly. A follow-up ultrasound later that week
finds that the fetus has a well-formed brain but lacks
a cranium or frontal bone ossification. The patient
goes for a follow-up appointment with a maternal-fetal
medicine specialist, who begins a discussion regarding
survivability. The patient is informed that fetal acrania
is a lethal anomaly and the child will not survive longterm
outside the womb. The patient and her husband
are visibly upset and ask for time to consider their
options—whether to terminate the pregnancy or carry
the fetus to term and proceed with palliative options.
Ongoing conversation takes place between the patient,
her husband, and the healthcare team during follow
-up appointments. At 22 weeks, the patient contacts
her obstetrician, the maternal-fetal medicine specialist,
and the neonatologist to inform them that she has
elected to carry the fetus to term, if possible, and to
proceed with palliative interventions when the child
is delivered. She is saddened by the limited options
but does not want to create any unnecessary suffering
for her child. The plan is confirmed with the patient
and she is scheduled for appropriate follow-up visits.
At 30 weeks, she contacts her obstetrician, maternalfetal
medicine specialist, and neonatologist to inform
them that she has spoken with another obstetrician
and now wants to proceed with organ donation. The
second obstetrician had counseled her that she had the
option of carrying the fetus to term, birthing the child,
and, when the child was declared dead, donating the
organs. As the patient explains to the neonatologist,
“This would allow some good to come from this tragic
The clinical team is surprised by the patient’s change
in plans and explains that this could be particularly
challenging because of several issues: 1) ethical concerns
about declaration of death (similar to those with
anencephalic children), 2) fetal acrania would likely
necessitate proceeding with a donation after circulatory
death, and they are uncertain whether this is
an ethically acceptable option, 3) concerns about the
newborn’s unnecessary suffering before organ procurement,
e.g., the potential need for intubation to stabilize
the newborn, 4) concerns about the use of scarce neonatal
intensive care unit resources for an infant who
will not survive and who will undergo procedures that
cannot directly benefit the infant.
The norms regarding declaration of death by circulatory
criteria and the use of scarce critical care resources to
support a prospective adult donor before organ donation
have been discussed elsewhere. The American Academy
of Pediatrics has provided guidance on pediatric organ
donation after circulatory determination of death,1,2
and the argument has been made that the ethical issues
surrounding neonatal donors are fundamentally the same
as for other pediatric donors.3–5
We propose that the medical team’s distress arises from the mother’s change in plans, particularly the discordance in values that each choice ascribes to the infant’s life. The staff were comfortable with either termination or delivery followed by palliative care. But they are concerned about delivery followed by organ donation. We use a narrative approach to analyze the meanings of the mother’s choices and to ask, Whose story is this? We argue that it is the mother who, in her need to revise her expectations, plans, and hopes for this child who cannot possibly survive, should be permitted to be the narrator of the infant’s short story.
The mother was initially offered two options in the
face of the infant’s acrania, both reasoned and supported
by principles. If we look closely at them, however, each
option tells an entirely different story about the infant’s
The option of immediate abortion is supportable under
established principles, even if not all are comfortable with
it. In this case, where the fetus has a lethal defect, this
decision is perhaps easier to justify. The collection of cells
that comprise the fetus tragically cannot survive to become
the hoped-for baby and so can be eliminated.
The second option is also supported by precedent and
experience. In this scenario, the mother has declared that
the fetus is already a baby, a potential person, whose life is
cherished despite its limitations.6
The mother can choose
to give that baby whatever life is possible, even if it is only
a longer time growing inside her. She can love and care for
her baby, coordinating with a perinatal hospice program
to ensure that the baby’s life is not filled with suffering.
The baby cannot survive long-term but can know love and
Yet the mother has proposed a third option, one that
confounds our expectations and experiences. The fact that
the mother did not elect an abortion demonstrates her
desire to engage with her child, if only for a short time.
By this act, she has endowed her infant with personhood.
Yet now she wants to support the baby’s life long enough
to provide organ donation. We propose that this case
represents a narrative dissonance, a clash of stories. This
third option seems to return the infant to the status of a
body without worth, to be used as a commodity. How can an infant be both beloved and used in such a way?
We do not know why she seemingly changed the
identity of her child yet again. Perhaps she was told of
the dire need for infant organs. Perhaps she views organ
donation as a kind of memorial to her baby. She learned
that the defective body, which will not hold her child in life,
can give a gift of enormous benefit to others. We doubt
that she intended to devalue or harm her baby by following
the new narrative. For her, the sacrifice likely gives new
meaning to the baby’s existence, providing a biography that
holds an explanation for the tragedy.
In declaring that she wants her baby’s organs donated,
however, the mother also rewrites the peaceful ending
provided by palliative care. It is not clear to us that the
mother understands the medical consequences of her
choice. It is essential that she be made aware of the possible
ways in which the act of donation may alter the infant’s
death. We can give analgesics, but there is no guarantee
that the infant will not suffer. At the very least, the infant
will at some point require an umbilical line and intubation.7
There certainly cannot be a quiet death in the mother’s
arms. But if the mother understands this fully, we believe
that her narrative of donation can be supported.
1. Committee on Bioethics. Ethical controversies in organ donation after circulatory death. Pediatrics. 2013 May;131(5):1021-1026.
2. Committee on Hospital Care, Section on Surgery, and Section on Critical Care. Policy statement—pediatric organ donation and transplantation. Pediatrics. 2010 Apr;125(4):822-828.
3. Brierley J. Neonatal organ donation: Has the time come? Arch Dis Child Fetal Neonatal Ed. 2011 Mar;96(2):F80-F83.
4. Brierley J, Larcher V. Organ donation from children: time for legal, ethical, and cultural change. Acta Paediatr. 2011 Sep;100(9):1175-1179.
5. Weiss, MJ, Hornby L, Witteman W, Shemie SD. Pediatric donation after circulatory determination of death: a scoping review. Pediatr Crit Care Med. 2016 Mar;17(3):e87-e108.
6. Lindemann H. Holding and Letting Go: The Social Practice of Personal Identities. Oxford, UK: Oxford University Press; 2014.
7. Powers RJ, Schultz D, Jackson S. Anencephalic organ donation after cardiac death: a case report on practicalities and ethics. J Perinatol. 2015 Oct;35(1):785-787.