1. Anencephalic Donation Possibilities Breakout Session B Presenters: Leandra McHargue, RN, BSN, Loma Linda University Medical Center Becky Hill, CPTC, OneLegacy Sarah Grays, RNC-NIC, CPTC, OneLegacy Moderator: Lynn Willis, MHA, UC Irvine Health

2. Understand the possible donation opportunities for anencephalic babies Learn the practical steps that can be taken to help families of neonatal/anencephalic infants Objectives:

3. What can I do at my hospital to begin helping parents of anencephalic infants incorporate donation into end of life care? Questions to Run On:

4. Turning a “No” Into a “Maybe” Anencephalic & Neonatal Donation Possibilities Leandra McHargue, RN, BSN Becky Hill, CPTC Sarah Grays, RNC-NIC, CPTC

5. The past: brief donation history The present  Why re-examine now?  Colin’s Story  What we learned  Arriana’s Story Looking to the future Agenda

6. 1980s: LLUMC formed an aggressive anencephalic donation program  Baby Gabriel  Focus was thoracic organs Debates on consciousness and brain death 1994: AMA recommended use of anencephalic infants as donors pre-death 1995: AMA suspended that policy Past: Brief History

7. Current possibilities and basic criteria  Liver for hepatocyte cell infusion: Cytonet Birth weight greater than 2kg Recovery within three hours of cardiac standstill  En-bloc kidneys: UC Davis Birth weight approximately 2kg Intubated at birth, done as DCD recovery  Heart Valves: tissue transplantation Weight greater than 3.6kg Present: Why Re-Examine Now?

8. Crossroads of medicine and the desire of these families to donate. Present: Why Re-Examine Now?

9. Leandra McHargue, RN BSN NICU Bereavement Coordinator Loma Linda University Medical Center Colin’s Story

10. The Perry Family

11. Colin’s Story

14. What We Learned Education & collaboration  Hospital staff, L&D, NICU, OR  Surgeons and recovering team Challenges of assessing a donor that has not yet been born Preparation for possible intubation/kidney recovery scenario Opportunities for liver donation Cardiac Standstill O2 Sat < 80% 3 consecutive hours of O2 Sats < 80% Occurs within 3 hours of last O2 Sat < 80% Liver must be flushed (in OR) within 3 hours of last O2 Sat < 80% Does not occur within 3 hours of last O2 Sat < 80% Liver is a medical rule-out due to poor perfusion Cytonet Liver Perfusion Criteria

16. Sarah Grays, OneLegacy Megan Aberl, Arriana’s Mom Arriana’s Story

17. Megan’s Family

18. Arriana’s Story

19. Arriana was born on December 11 at 2252 to proud parents Megan & Ignacio Arriana’s Story

21. Arriana’s Gift Arriana became the 20th anencephalic infant to donate in the US in 2012

22. Families have the desire to donate Five potential donors in one year  Each baby and hospital team inspired & educated Future potential:  Pediatric DCD heart: Loma Linda University Medical Center  Organs for research: International Institute of Medicine Looking to the Future

23. Thank You Loma Linda University Medical Center Kaiser Permanente Riverside Medical Center Riverside County Regional Medical Center Providence Saint Joseph Medical Center Riverside Community Hospital

24. What can I do at my hospital to begin helping parents of anencephalic infants incorporate donation into end of life care? Questions to Run On: