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Anencephalic infants: life expectancy and organ donation
J J Pomerance1, A Morrison, R L Williams
1Department of Pediatrics, Cedars-Sinai Medical Center, Los Angeles, CA 90048.
Insights
Anencephalic infants can potentially live longer with modern intensive care, offering a unique opportunity for organ donation. Current laws may need revision to allow extended support for this purpose.
Area of Science:
- Medical Ethics
- Neonatal Intensive Care
- Organ Donation
Background:
- Anencephalic infants historically received minimal support, with some surviving over a week.
- Modern neonatal intensive care may significantly extend survival times for anencephalic infants.
Purpose of the Study:
- To evaluate the potential for extended ventilatory support in anencephalic infants for organ donation.
- To advocate for legal changes permitting longer support for organ procurement.
Main Methods:
- Review of historical data on anencephalic infant survival.
- Analysis of preliminary data from neonatal organ transplantation centers regarding ventilatory support duration.
Main Results:
- Nearly 9% of anencephalic infants born between 1978-1982 survived over a week with minimal support.
- Seven to 14 days of ventilatory support are feasible without brainstem death in specialized centers.
Conclusions:
- Anencephalic infants represent a special case for organ donation, not meeting brain death criteria.
- Parents should be permitted to continue ventilatory support for organ donation purposes.
- Legal frameworks should be updated to facilitate organ donation from anencephalic infants.
Abstract:
Between 1978 and 1982, 205 anencephalic infants weighing more than 2,500 g were born alive in California. Although typically none were offered significant support, almost 9% lived more than one week. It seems reasonable to assume that modern intensive care would have increased survival times dramatically. In fact, preliminary data from centers specializing in neonatal organ transplantation demonstrate that seven to 14 days of ventilatory support can be accomplished for anencephalic infants without occurrence of brainstem death. Given these data and medical information that clearly establishes anencephalic infants as a "special case" of children who have not suffered brain death but could reasonably be used as organ donors, we believe that parents who wish to do so should be allowed to continue ventilatory support for their anencephalic children for whatever period of time is necessary to find organ recipients and arrange for organ donation. Arbitrary cutoff points for intensive care and artificial criteria for brain death should not be necessary to allow the use of anencephalic infants as organ donors. We believe that current laws should be changed to permit this scenario.