Abstract

Introduction Neonates represent a small percentage of all pediatric organ donors. Donation after circulatory determination of death (DCD) for neonates is increasing in the US. In particular, anencephalic infants are a potential source of neonatal organs and tissues but donation potential has not been studied. We reviewed the experience with anencephalic donors from 3 organ procurement organizations (OPOs) in the US. Methods Data from anencephalic organ donors were retrospectively reviewed from 3 OPOs within the US. Descriptive data included, gestational age, weight, gender, donation discussions prior to delivery, infant management post-delivery, organs recovered, organs transplanted, organs for research, and reasons organs were not recovered or transplanted. Results Seventeen anencephalic donors from 3 different OPO’s were identified over a 6-year period. There were 10 males and 7 females. Average gestational age was 36.9 weeks (range 27-41 weeks). Average weight was 2,346 grams (range 1,200-3,210 grams). Donation was discussed prior to birth in all cases. Parent(s) in 8 (47%) cases contacted the OPO directly. Donation was attempted in 5 (29%) anencephalic infants. Elective intubation was successful in 4 of 5 infants. One patient could not be intubated and was manually ventilated. Two patients had umbilical venous lines and 2 patients had an umbilical arterial line placed. Viable organs/tissues were recovered from 4 infants and included 2 livers, 2 kidneys, and 2 sets of heart valves. Only 2 kidneys were transplanted. Livers were used for hepatocyte transfusion research. Primary reasons organ recovery and transplantation did not occur included: patient did not expire within 60 minutes (n= 1), size and gestational age (n=1), recovery surgeon not available (n=1), family did not want to escalate care once intubated and patient expired (n=1). Donation was not pursued for the other 12 infants because, family declined intubation (n=3), stillborn (n=3), hospital would not allow intubation of the infant (n=1), recovery surgeon not available (n=1), size and gestational age (n=2), did not expire within 60 minutes (n=2). Conclusions Anencephalic donors are a very small percentage of neonatal DCD donors. Size/weight restrictions and progression to death within 60 minutes are limiting factors prohibiting donation. Few viable organs are recovered for transplant from these patients. Livers for hepatocyte transfusion research and heart valves were more commonly recovered. Parent initiated donation is common in this select group of donors.

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