Neonatal Acrania and Organ Donation: Whose Story Is This?

2017 - 6 December – Giving and Volunteerism
Jason Lesandrini, PhD(c); Amanda Evans, MD, FAAP; Joan Liaschenko, PhD, RN, FAAN; Lisa Freitag, MD, MA
This article addresses the ethics of organ donation.

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 situation.”

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 personhood.

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 comfort.

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.