ENGAGING NURSES IN NEC SYMPOSIUM 2019
To inspire nurses to attend, the April 2017 issue of Advances in Neonatal Care (ANC) reported how a parent-led advocacy group, the NEC Society, was preparing for an inaugural NEC Symposium1 made possible by funding from the Patient-Centered Outcomes Research Institute (PCORI).2 Hosted by the University of California, Davis, from April 5 to 7, 2017, the NEC Symposium was a phenomenal success with Northern California NANN chapter exhibiting at the symposium, having 2 nursing members as speakers, and nearly one-fourth of the participants from nursing profession, some of them being parents of necrotizing enterocolitis (NEC)-affected children.
It marked a significant milestone toward innovative interdisciplinary collaboration to tackle NEC, not only in US neonatal intensive care units (NICUs) but globally as well. This article informs NANN members what has been accomplished since the inaugural NEC Symposium, what is planned for the second NEC Symposium in 2019, and how NANN is engaged with the NEC Society's mission.
HOW NANN AND THE MICHIGAN CHAPTER OF NANN ARE ENGAGED
NANN and the State of Michigan Chapter SMANN will be exhibiting at the NEC Society's symposium. NEC is a devastating condition and neonatal nurses are frequently the first to notice the subtle signs: a child who previously tolerated feedings—but now has a distended abdomen, increasing aspirates, and lethargy. We vigorously do all in our power to support the affected infants and their family members, celebrate when recovery occurs, and grieve with families when the disease overpowers against all the efforts.
NANN's role of advocating for and encouraging parent involvement in their child's care mirrors one of the Society's stated goals “Empowering patients and families, and supporting their engagement as part of the baby's care team.” As NANN members, we have the opportunity to make an impact on the outcomes of infants and families affected by NEC. The NEC Society's webpage contains valuable information for families and clinicians. NANN President Joan Rikli invites NANN members to consider accessing this site to learn more about resources and opportunities to become involved in this important work. NANN members' participation at the upcoming NEC Symposium would boost the visibility of nursing efforts toward the goal to end NEC. Information such as the NEC Society's Online Support Community designed for affected parents3 or other resources would be highly useful.
NEC SOCIETY FOUNDED BY FAMILIES BLINDSIDED BY NEC
The NEC Society was born after Jennifer and Noah Canvasser lost their 11-month-old son, Micah, to complications of NEC. Jennifer Canvasser, founder and director of the NEC Society, recently shared her family's story with SIGNEC,4 which is a Special Interest Group for NEC based in the United Kingdom, established by Dr Minesh Khashu in 2012.5 Jennifer never thought that she would be an NICU mother, since she was going to go through her pregnancy with utmost care to do everything “right” to prevent any complications. Jennifer stated that premature births can occur suddenly and that she was utterly not prepared for an NICU journey. Jennifer's twins were born at 27 weeks' gestation in 2012, and both of them conquered their typical NICU milestones by the time they were 6 weeks old. Once the twins had each reached 5 lb, Jennifer shared that she felt like they were “home free.” She and her husband never dreamed of NEC attacking Micah, blindsiding them all. She recollects how Micah's NEC shocked everyone, including the care team. Micah was on peritoneal dialysis for a few weeks, but it was ineffective. Continuous renal replacement therapy (constant hemodialysis) was provided for 3 months, and then he relied upon intermittent hemodialysis until he passed away at 11 months.
After Micah died, the Canvasser's and their parent colleagues, Erin Umberger and Ryan Raab, who lost their daughter, Sarah, to NEC became committed to driving research and preventing NEC. The NEC Society, a nonprofit organization, was founded in 2014 to improve outcomes for infants who are at risk for NEC by bringing together diverse stakeholders to facilitate research. Since 2014, the NEC Society has succeeded in connecting patient–family advocates from around the world who have been impacted by NEC, as well as industry partners, scientists, and clinicians to raise awareness for NEC, identify best practices to prevent NEC, and ultimately to spread the hope to 1 day prevent it for good.
INTENT AND OUTCOMES OF 2017 NEC SYMPOSIUM
The 2017 NEC Symposium theme was, “A Transdisciplinary Approach to Improved Outcomes,” with 4 overarching goals. The goals were to (1) review state of the science of pathogenesis, prevention, and treatment for NEC; (2) establish transdisciplinary collaborations to accelerate implementation of evidence-based practices; (3) explore methods to empower and engage families; and (4) serve as a venue to scaffold new collaborations and sharing of research resources (eg, biobanks, clinical databases, and tools).1 The parent-engagement theme was strongly influenced by a study that the NEC Society did with Dr Samir Gadepalli from the University of Michigan to identify what parents knew about NEC before their infant was diagnosed and how they wanted to be involved.6 This event was significant for many reasons. It was not only the first meeting organized by the NEC Society, but also the first NEC-focused transdisciplinary meeting held in North America.7 This meeting catapulted the scientific, clinical, and parent-advocate communities into new levels of effectiveness. For more detail, see the NEC Symposium Executive Summary at https://necsociety.org/wp-content/uploads/2017/05/2017-nec-symposium-summary.pdf.
THE NEC SOCIETY'S ACCOMPLISHMENTS IN 2018
The NEC Society kept its momentum after the successful NEC Symposium in 2017 by accomplishing numerous important achievements. One of the achievements was a special issue in Seminars in Pediatric Surgery, which addressed the key topics and speakers from the symposium.8 The entire issue covers a wide array of topics regarding NEC and is downloadable for free (https://www.sciencedirect.com/journal/seminars-in-pediatric-surgery/vol/27/issue/1). An adherence score for NEC prevention was also validated and published with the support of the NEC Society in 2018.9
Other achievements include being awarded the second PCORI award to support the 2019 NEC Symposium, participation in the California Marathon in honor of more than 50 infants who were affected by NEC raising over $6500, establishment of May 17th as the annual international NEC awareness day, creating a parent-engagement video with the University of Arizona, and bolstering activities among the research collaborative.10
2019 NEC SYMPOSIUM (ANN ARBOR, MICHIGAN; JUNE 2-5, 2019)
The NEC Society board members and program planners began working together to organize the second NEC Symposium immediately after the success of the inaugural 2017 meeting. The Second NEC Symposium will convene on June 2 to 5, 2019, at the University of Michigan (UoM) in collaboration with the UoM Section of Pediatric Surgery and supported by an engagement award from the PCORI.11 The second NEC Symposium will welcome families impacted by NEC, neonatal professionals, scientists, any other members in the healthcare team, industry partners, and members from regulatory agencies. Its theme is, “Breaking Down the Barriers of NEC Prevention and Treatment.”12 Keynote presentations titled, “Uniting Providers and Patient-Families towards NEC Prevention and Improved Outcomes” will be delivered by the president of the Vermont Oxford Network, Dr Roger Soll. Dr Mark Underwood of University of California, Davis, will provide the “Recent Breakthrough and Promising Directions” regarding NEC on the opening day. Leading scientists and clinicians are faculty, including NANN member and ANC board member, Dr Sheila Gephart, of the University of Arizona College of Nursing. Most topics will be of interest to NICU nurses, including issues around feeding, fortifiers, NEC risk awareness and timely identification tools, and ways to unite teams to avoid NEC and advance the science.
The unique transdisciplinary approach offered by the NEC Symposium will “provide the setting for discovery, collaboration and sustained partnerships on research,”11 while demonstrating the value of patients and families to be included in discussion and partnership from planning to implementation. Indeed, the NEC Society is certified as a “Patients Included” meeting.13 “Patients Included” meetings must meet the designated 5 charter clauses to ensure the meeting is not only meaningful to the clinicians and scientists, but also highly relevant to the patients and families as participants, planners, and presenters.14 One of the highlights of the program, the Patient-Family Keynote Panel presentation will include an NEC survivor, a parent of an NEC survivor and a parent who lost a child to NEC.15 Compelling presentations will enhance clinicians' understanding of NEC family's perspectives.
A full program brochure can be downloaded at https://necsociety.org/wp-content/uploads/2018/11/NEC_Symposium_AnnArbor_2019.pdf, and registration information can be found at https://www.eventbrite.com/e/nec-symposium-registration-46901501654. In accordance with the fifth charter clause for “Patient Included” certification, the NEC Symposium will be posting live meeting highlights with photographs on social media with the use of the hashtag #NEC2019 throughout and after the symposium in June. Please stay tuned.
1. Gephart SM, Eklund WM. The inaugural NEC symposium: a transdisciplinary approach to tackle necrotizing enterocolitis in US neonatal intensive care units [published online ahead of print March 2, 2017]. Adv Neonatal Care. doi:10.1097/ANC.0000000000000388.
4. SIGNEC. With Micah in my heart and the NEC Society in my hands. https://signec.org/blog/
. Published 2018. Accessed December 21, 2018.
6. Gadepalli SK, Canvasser J, Eskenazi Y, Quinn M, Kim JH, Gephart SM. Roles and experiences of parents in necrotizing enterocolitis: an international survey of parental perspectives of communication in the NICU. Adv Neonatal Care. 2017;17(6):489–498.
8. Markel TA, Underwood MA. Preface: The NEC Society. Semin Pediatr Surg. 2018;27(1):1–2.
9. Gephart SM, Wyles C, Canvasser J. Expert consensus to weight an adherence score for audit and feedback of practices that prevent necrotizing enterocolitis in very low birth weight infants. Appl Nurs Res. 2018;39:182–188.