Use of anencephalic newborns as organ donors

Question 1

What are some important ethical features and medical criteria for transplantation in infants?

Answer 1

1. “Dead donor rule”
2. Requires surrogate informed consent
3. Physicians involved in organ transplantation should not be involved in donor consent

Question 2

Why is there a serious organ donor shortage for infants?

Answer 2

Due to organ size restrictions this shortage has not been alleviated by strategies to increase donation rates or by increasing living related donation

Question 3

What are some benefits of organ donation?

Answer 3

1. Saving another infant’s life

2. Giving the death of their infant some spiritual meaning

Question 4

What is anencephaly?

Answer 4

A central nervous system abnormality that is characterized by congenital absence of the forebrain, skull and scalp. Some rudimentary forebrain tissue may exist and a functioning brainstem is usually present. Most anencephalic infants die within days or weeks without life-supporting interventions

Question 5

When can an anencephalic infant be considered for organ donation?

Answer 5

They can only be considered for organ donation if they satisfy criteria for brain or somatic death as applied to other human beings

Question 6

Why do anencephalic infants typically not meet standard criteria for organ donation?

Answer 6

1. Do not usually meet standard brain death criteria due to adequate brainstem function that maintains spontaneous respirations and HR
2. By the time brain or somatic death is declared organs will have undergone ischemic damage due to the gradual deterioration in cardiovascular and respiratory functions
3. Use of life support does not improve the chance of organ donation as multisystem organ failure develops before sudden death

Question 7

What are some ethical concerns opposing organ donation from living anencephalic infants?

Answer 7

1. application of similar arguments in favour of organ donation from other seriously brain-damaged living patients;
2. serious risk of loss of public trust in transplantation programs;
3. serious deleterious effects on families and staff involved in such cases; and
4. risk of loss of public respect for the intrinsic value of all human life.

Question 8

What factors have reduced the potential benefits from using anencephalic infants as organ donors?

Answer 8

1. Significant reduction of anencephalic infants born at term due to:
   a) Prenatal US detection of anencephalic infants and pregnancy termination
   b) Folate fortification and pre-conceptual folate supplementation reducing incidence of NTD incld. anencephaly
2. HLHS is not treated with Norwood surgery not transplantation

Question 9

What are the CPS recommendations regarding use of anencephalic infants as organ donors?

Answer 9

1. Organ donation from anencephalic infants should not be undertaken due to the serious difficulties surrounding the establishment of brain death in these infants and the lack of evidence to date supporting successful organ transplantation.
2. There should be no alteration or modification of standard infant brain death criteria to include infants with anencephaly.
3. Families who request the opportunity to donate organs from their infant with anencephaly should have information and educational material provided that explain why this practice is not supported. The option of tissue and stem cell donation should be discussed using the ethical principles and medical practices applied to other donors.
4. The practice of using medical therapy and mechanical ventilation to maintain organ function pending the declaration of death in infants with anencephaly is not supported.