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1. Michigan Health & Hospital Association and Gift of Life MichiganWelcome to the MHA Keystone: Gift of Life WebinarWednesday, March 21, 20121:00 pm – 2:00 pm Please stand by…The webinar will begin shortly… • Due to the attendance today, all participant lines will be muted upon entry. If you have a comment or question, please use the Chat function. Chats can be directed either privately to the host, or publically to all attendees. • If a pop-up box does not appear with instructions to receive a call-back, go to “Communicate” in the top menu, click “Teleconference”, and then “Join Teleconference”. Enter your phone number and the WebEx system will call you. • To receive technical assistance, please press *0 and you will be connected to a WebEx Specialist.

2. Today’s topic: Neonatal and Pediatric Donation: Saving Children through Transplantation, Therapy, and Research Introductions: • Ashley Renkes Hospital Services Associate, Gift of Life Michigan Questions: • Please type questions into the chat box • A question and answer session will take place at 1:45pm • If you prefer to pose your question anonymously, please direct the chat to the “Host and Presenter” so that your question is sent only to them.

3. Neonatal and Pediatric Donation: Saving Children through Transplantation, Therapy, and Research Gift of Life / Keystone Webinar Series March 21, 2012

4. W E L C O M E ! 2012 Webinar Series • Partnership between MHA and Gift of Life Michigan • Today’s speakers: Corinne Doran, RN, BSN, CPTC Donation Coordinator, Gift of Life Michigan Laurie Shafer, RN, BSN Assistant Manager, PICU, Hurley Children’s Hospital Kyle Kinsey, BS, CPTC Senior Donor Development Manager, Cytonet, LLC

5. Questions to Run On… In the Pediatric and Neonatal Patient Population: • Who are the candidates for organ and tissue donation? • What can be donated? • When do hospitals refer patients to Gift of Life? • How can hospitals help facilitate donation to prevent deaths on the waiting list? • What options can Cytonet offer families who cannot donate their children’s organs for transplant?

6. Just the Facts: Organ Donors and Recipients in the Neonatal and Pediatric Population Corinne Doran, RN, BSN, CPTC Donation Coordinator Gift of Life Michigan

7. Who is Waiting? Pediatric Patients Currently on Transplant Waiting List

8. Jai’Wan is Waiting! Jai’Wan is 11 and started dialysis when he was seven months old. He has been on the waiting list for a kidney transplant for five years. Jai’Wan spends four days a week at the dialysis center.

9. Who Can Donate? • Vented or Non-vented Pre-term Babies • Anencephalic Babies What can potentially be donated? • Liver for hepatocytes • Heart for valves

10. Who Can Donate? Full term infants (and older) who meet “clinical triggers” will be evaluated at the time of referral. What can be donated? • Organs: heart, lungs, liver, kidneys, pancreas, small intestine • Tissues • Heart valves (all ages) • Corneas (five years or older) • Bone & other tissues (12 years or older)

11. Total Organs Donated & Transplanted Patients age <15 in Michigan 2011

12. Organ Donors <18 Months of Age Michigan 2011

13. Organ Donors Age 18 months – 15 years Michigan 2011

14. Pediatric Tissue & Therapy Donors Michigan 2011

15. Pediatric Transplants & Deaths 2011

16. When Does the Hospital Call Gift of Life? Organ Donation: All patients who meet “clinical triggers” will be referred by hospital and assessed by Gift of Life for donation potential. Tissue Donation: All neonates, infants and children who die and are issued a birth certificate should be referred to Gift of Life Michigan.

17. When does the hospital call Gift of Life? • What are “Clinical Triggers?” • Specific medical parameters which prompt hospital staff to make a referral to Gift of Life on a potential organ donor.

18. Typical NICU & PICU Clinical Triggers Organ donation: Call Gift of Life within 1 hour on: • Vented patients with a neurological injury. • Vented patients being evaluated for brain death. • Patients being considered for withdrawal of medical treatment or ventilator support. Tissue donation: Call Gift of Life within 1 hour of expiration. Any time a family brings up donation, even before a baby is born, please call Gift of Life!

19. Regulatory Agencies CMS requires hospitals to notify the OPO: • Within 1 hour of patient meeting clinical triggers • Within 1 hour of death Hospitals are required to collaborate with Gift of Life to ensure that the family of every eligible decedent is offered the option of donation.

20. CMS Conditions of Participation Key points of COPs: • Reporting ALL deaths and imminent deaths to the OPO in a timely manner. • The OPO determines medical suitability on a case-by-case basis, regardless of gestational age or weight. • Only an OPO staff member may approach the family of a potential donor for consent for organ, tissue or eye donation. This regulation recognizes that training and skill are required to guide a family through this crucial decision.

21. Case Study in Pediatric Donation:Perspectives from a PICU Nurse • Laurie Shafer, RN, BSN • Assistant Nurse Manager, PICU • Hurley Children’s Hospital • Flint, Michigan

22. Background • PICU nurse for over 12 years. • Involved in many donor cases. • Early exposure to organ and tissue donation: • Felt uninformed; • Hesitant to release information to Gift of Life!

23. Consider this: • Talking about donation can be uncomfortable. • We must acknowledge that feeling! • We need to see this transition of care as being a mission to save not one life, but to save several instead. • We are also on a mission to carry out a family’s last wishes for their child’s life. • “Donation, simply stated, is a medical option for end of life care.” – Dr. Tom Nakagawa, Wake Forest University

24. Case Study • 4-month-old baby, no significant medical history. • Timely referral to Gift of Life through the ED within an hour of patient meeting clinical triggers. • Initial CT showed skull fracture, subdural hematoma, retinal hemorrhage, and soft tissue swelling. • Gift of Life responded on site 1 hour, 20 minutes after the initial referral.

25. Case Communication • Initially, patient was not brain dead and family members were under investigation for child abuse. • Hospital updates called to Gift of Life for two days during treatment. • Coordinator response to changes in neurological status. • Unit re-called Gift of Life with additional clinical triggers. • Initiation of brain death testing, family discussions regarding code status and withdrawal of ventilator support.

26. Case Communication • Family changed code status to DNR prior to declaration of brain death. • Gift of Life huddled with pediatric intensivist and nursing staff. • Collaborative approach process where hospital staff and Gift of Life work together to approach family about donation. • Decision to initially approach for DCD due to change in code status and possible brain death testing. • Family gives authorization for donation on day three of admission. • Patient pronounced brain dead later that day.

27. Approaching the Family • Intensivists direct the care of the child early on along with the other caregivers at the bedside (nursing, etc.) • Be aware of the environment that initial donation information is presented. • Communicate with families in simple, honest, straightforward terms. • Be able to help explain the processes surrounding donation.

28. After Authorization • Patient and mother’s blood samples drawn and sent to Gift of Life lab. • Need both blood samples if patient is less than one month old, or if patient is currently breast fed. • Gift of Life coordinates recovery of organs with local Medical Examiner. • Organs are placed through the United Network for Organ Sharing. • Patient is taken to OR and organs are recovered.

29. Overcoming Barriers • Difficulties drawing adequate blood sample from patient. • Central line clots, difficulty placing new lines. • Abuse case, family custody, and medical examiner involvement. • Important for hospital staff to stay involved in the care process, especially through complications and barriers; it’s important to the family and for maintaining the continuum of care.

30. Life-saving Results • Organs recovered on fifth day after admission. • Six organs recovered, four lives saved! • 51-year-old woman received her right kidney • 53-year-old woman received her left kidney • 3-month-old baby boy received his heart • 8-month-old baby boy received his liver, pancreas, and intestines. • Medical examiner investigation completed before release to funeral home.

31. Summary • Refer early, and refer often. • Understand the importance of a collaborative approach. • Maintain communication throughout the donor event. • Provide good family support by remaining involved in the case. • Work together to overcome barriers in a complex case.

32. Neonatal Liver Donation An opportunity… …to comfort a grieving family …to save another child’s life Kyle Kinsey, BS, CPTC Cytonet, LLC

33. An Opportunity NICU & Labor and Delivery • If the neonate: • Meets Gift of Life clinical triggers • Is ventilated and terminal • Is “comfort measures only” • Has an APGAR Score of 1 • Cytonet liver donation may be possible to help another child’s liver regenerate and treat their disease. • Refer through Gift of Life • 800-482-4881

34. Urea Cycle Disorder (UCD) • The urea cycle removes nitrogen from the blood, converts it to urea, and excretes it from the body • In UCD, an enzyme deficiency causes the nitrogen to accumulate in the form of ammonia; leaving the body unable to remove it from the blood stream • Toxic levels cause irreversible brain damage, coma and/or death Current Treatment – Liver Transplantation?

35. Liver Statistics Hope and Goal: Liver cell transplantation can be a bridge to transplantation; and hopefully an alternative.

36. Liver Cell Therapy

37. An Opportunity Neonatal Donor Criteria • Live birth – APGAR >1 • Gestational age 32 weeks • Weight  1000 gm • Known cause of death • No evidence of maternal high risk behavior

38. When to Call? • Vented patient: • When being considered for withdrawal of medical treatment or ventilator support. • Non-vented patient: • Prior to the death • Before induction or c-section, if possible. • A timely referral provides: • Information to make an informed decision • Time to coordinate a successful recovery • Call Gift of Life at 800.482.4881

39. When Referring…Tell the Story • Current and past medical history; including congenital defects or known syndromes • Prenatal diagnosis if applicable • Pending cause and manner of death • Liver function tests if available- NICU • Current and trends in MAP, SaO2 if available - NICU • Signs or symptoms of infection – if available • Plan of Care

40. Elements of informed authorization Benefits and possible outcomes of the gift Research Required maternal history; blood for testing Process after support withdrawn: timing and observation Family Discussion

41. Before Support Withdrawn or Prior to Birth • Screening with Gift of Life / Cytonet • Mother and baby’s blood draw • Coordination of process • Funeral Director and ME communication Time and needs guided by the family

42. Saying Goodbye Respect for time Privacy Advocacy Opportunity for donation

43. Huddle – Pre Recovery Transfer logistics: who, when, how Post recovery plan: who, when, where, how

44. Observation Time: Communication • Family has clear understanding of observation and timing • Staff aware of process; physician available for declaration • Documentation of MAP and SaO2 • OR suite and OPO recovery team on stand by

45. Post Recovery Recovery team will suture the incision, bathe, dress and wrap the baby in a blanket NICU or Labor and Delivery staff will be notified when the baby is ready to be presented to the parents Designated and defined transport

46. Follow up care Letters – outcome of gift Donor Family Recognition Programs When and if the cells are transplanted, recipient information Cytonet Teddy Bear Family Aftercare and Follow-up

47. "There is no foot so small it cannot leave an imprint on this earth."

48. ... to comfort a grieving family An opportunity…. … to save another child’s life.

49. How Can You Help Save Lives? • Educate all staff about clinical triggers. • Establish a culture on your unit that makes organ and tissue donation an integral part of end-of-life care. • Empower the process by: • Referring patients in a timely manner. • Facilitating communication between family and Gift of Life.

50. Baby Logan 10 Days Old