Chapter 3 Index

A. Ethics:

The Anencephalic Newborn: Person, Patient or Potential Organ Donor

Brian Carter, MD

Definition of Anencephaly: A lethal malformation of the CNS in which the forebrain, cerebellum, cranium, and scalp do not form.  It occurs in 1:500 to 1:2000 live births.  Two-thirds are stillborn and many more die soon after birth: >95% are dead by one week of age.  This leaves about 100 - 200 viable babies a year born in the US with anencephaly.

Questions Each Doctor Must Answer When Dealing With a Child With Anencephaly:

1. Will you intubate the child in the delivery room?
2. Will you transfer the child to a tertiary medical center?
3. Will you honor parents’ requests if they want intubation, life support or NG feeds?

Approach to Consider When Trying to Answer These Questions:
In order to determine how you will deal with these questions, you might need to ask yourself the following questions:

1. Is the Anencephalic Baby a Person? The concept of personhood is defined differently by physicians, philosophers, ethicists, and theologians.  The definitions of a person embody the following:

a. Biological Considerations: that is, if a child is “born of a human”, then genetically the baby contains the genetic code to be human.

b. Psychological considerations: in order to be a person, the child should have an ability to sense and feel the environment, demonstrate potential rationality, self-consciousness and communication. 

c. Moral considerations: because a child is human in any sense, some feel that we have a moral duty to give the baby certain rights - such as a right to life.  Others would consider this stage to occur only after a given point of embryologic development.

Results of Your Assessment About Whether the Anencephalic is a Person:

a. If you think baby is a person, then the infant should be treated as any other baby with any other condition.  As the physician seeking this patient’s best interests, competing interests, even organ donation to benefit other parties, cannot supersede your patient’s well being.  Such actions must be considered only after securing the interests of the vulnerable patient, even if those interests only serve to provide him/her comfort or hospice care.

b. If you decide that baby is not a person, then organ donation process may be easier.

2. Is the Anencephalic Baby Your Patient?  If you decide the baby is a person, that might imply that you have a duty to care for this patient.  To what extent is the lack of potential? Important in developing this relationship?  If we decide the baby is a patient, at what point do we decide we are just doing things to the baby, not for the baby?

3. Is the Anencephalic Baby a Potential Organ Donor?  At this point in this country, it has been ruled by various state courts that babies with this condition cannot be organ donors. Should we consider this a failure of our system?  Should we argue for the ability to use these babies for transplant?  The answers to these questions might result from the answers to the other two questions.

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Department of Pediatrics  |  Medical College of Georgia
Please email comments, suggestions or questions to:
John T.  Benjamin M.D.,  jbenj@mcg.edu

February 27, 2004