In Episode 12, Stephanie Vaughan, Co-founder and President of The Morgan Leary Vaughan Fund, goes from Speaking of NEC: Necrotizing Enterocolitis host to guest as media broadcaster Jeff Bradbury turns the microphone on her for a retrospective. Stephanie reflects on the podcast series itself, and her experiences as a mother-turned-prematurity-and-rare-disease-advocate-turned-podcaster. She also looks towards the future for The Morgan Leary Vaughan Fund. Copyright © 2016 The Morgan Leary Vaughan Fund, Inc. This episode was produced in part by the TeacherCast Educational Broadcasting Network. [powerpress] Copyright © 2016 The Morgan Leary Vaughan Fund, Inc. The opinions expressed in Speaking of NEC: Necrotizing Enterocolitis (the Podcast series) and by The Morgan Leary Vaughan Fund are published for educational and informational purposes only, and are not intended as a diagnosis, treatment or as a substitute for professional medical advice, diagnosis and treatment. Please consult a local physician or other health care professional for your specific health care and/or medical needs or concerns. The Podcast series does not endorse or recommend any commercial products, medical treatments, pharmaceuticals, brand names, processes, or services, or the use of any trade, firm, or corporation name is for the information and education of the viewing public, and the mention of any of the above on the Site does not constitute an endorsement, recommendation, or favoring by The Morgan Leary Vaughan Fund.

Speaking of NEC: Necrotizing Enterocolitis"

Year in Review—The Epilogue to Speaking of NEC

 Dr. Corrine Hanson. Photo courtesy of Dr. Corrine Hanson. Episode 11 features Dr. Corrine Hanson, Associate Professor in the Division of Medical Nutrition Education, College of Allied Health Professions, University of Nebraska Medical Center (Omaha, NE). Dr. Hanson provides a comprehensive overview of standardized feeding protocols as they apply primarily to very low birth weight babies, those weighing less than 1500 grams (3 pounds 4.91 ounces) and who have the greatest risk for developing the NEC. She discusses: * The unique nutritional needs of very low birth weight babies * The importance, and inherent challenges, of initiating the feeding of premature babies * What constitutes standardized feeding protocols * How standardized feeding protocols appear to decrease rates of NEC and improve outcomes * Nutritional support related to a secondary diagnosis of Short Bowel Syndrome. Copyright © 2016 The Morgan Leary Vaughan Fund, Inc. This episode was produced in part by the TeacherCast Educational Broadcasting Network.

Nutrition Practices in the NICU—Perspectives from Dr. Corrine Hanson

 Dr. Sergio Golombek. Photo courtesy of Dr. Sergio Golombek. Episode 10 features Dr. Sergio Golombek, a Professor of Pediatrics and Clinical Public Health at the New York Medical College and an Attending Neonatologist at The Regional Neonatal Center, Maria Fareri Children’s Hospital at Westchester Medical Center (Valhalla, NY). During the episode, Dr. Golombek discusses: * How researchers are refining the definition of NEC, and other prematurity-associated complications that may currently fall under that umbrella term, * The evolution in prevention and diagnosis strategies of NEC, * The colonization of the intestinal microbiome, and the role it can play in immune system regulation, and inflammatory diseases like NEC, * Additional research trends in NEC, including his unit’s research of granulocyte-colony stimulating factor (G-CSF) in the prevention and treatment of NEC, and * The importance of individualized patient care in the NICU. Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. This episode was produced in part by the TeacherCast Educational Broadcasting Network.

Current Trends in NEC—Perspectives from Dr. Sergio Golombek

Episode 9 features Yamile Jackson, expert parent, Founder and CEO of Nurtured by Design, and award-winning inventor/designer of The Zaky and the Kangaroo Zak. During the episode, Yamile provides a comprehensive overview of Kangaroo Care and ergonomics as related to premature infants and the NICU environment. Yamile also shares her son Zachary’s story of prematurity and survival including a near fatal encounter with a natural disaster during his NICU stay, and how their experience led her to found Nurtured by Design—the first in its class, global leader in neonatal ergonomics. She discusses: The premature birth of her son Zachary at 28 weeks, How Zachary had to be kept alive by hand for 9 hours after Tropical Storm Allison shut down their hospital, How hers and her family’s experience with prematurity led her to invent The Zaky and the Kangaroo Zak, The clinical evidence showing a 50% reduction in apnea and bradycardia events with the use of The Zaky, no events with the use of a maternally-scented Zaky, and 30 times more effective self-regulation with the use of a maternally-scented Zaky, The importance of developmental care and family-centered care in the NICU. Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. This episode was produced in part by the TeacherCast Educational Broadcasting Network. Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. The opinions expressed in Speaking of NEC: Necrotizing Enterocolitis (the Podcast series) and by The Morgan Leary Vaughan Fund are published for educational and informational purposes only, and are not intended as a diagnosis, treatment or as a substitute for professional medical advice, diagnosis and treatment. Please consult a local physician or other health care professional for your specific health care and/or medical needs or concerns. The Podcast series does not endorse or recommend any commercial products, medical treatments, pharmaceuticals, brand names, processes, or services, or the use of any trade, firm, or corporation name is for the information and education of the viewing public, and the mention of any of the above on the Site does not constitute an endorsement, recommendation, or favoring by The Morgan Leary Vaughan Fund.

Developmental Care in the NICU—Perspectives from Yamile Jackson, PhD, PE, PMP

GutCheckNEC—A Comprehensive Overview of Risk Assessment with Dr. Sheila Gephart

The NEC Society — Perspectives from Parents of Infants Impacted by NEC

Joseph’s Story

Episode 5 features Dr. Naveed Hussain, Associate Professor of Pediatrics at the University of Connecticut School of Medicine and Director, Neonatal Research and Neonatologist at Connecticut Children’s NICU at University of Connecticut Health Center in Farmington, CT. During the episode, Dr. Hussain provides an overview of transfusion associated NEC, or TANEC, as it relates primarily to extremely low birth weight babies, those weighing less than 1000 grams (2 pounds 3 ounces) or those born very premature at less than 28 weeks gestation, and who have the greatest risk for developing the disease. He discusses: * The significant role of blood transfusions in the NICU, and the frequency with which they may be required * What constitutes transfusion associated NEC, and some of the controversies surrounding TANEC * The critical period after a blood transfusion when a premature baby may be most at risk for developing NEC * Some of the correlations between blood transfusions, feedings, and NEC * His current research focused on the epidemiology (patterns of occurrences) of NEC * Additional technology and protocol trends in the prevention of NEC. Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. This episode was produced in part by the TeacherCast Educational Broadcasting Network.

What is TANEC? — featuring Dr. Naveed Hussain

100% Human Milk Diet—Perspectives from Dr. Martin Lee

Dr. R. Lawrence Moss. Photo courtesy of Nationwide Children’s Hospital Episode 3 features Dr. R. Lawrence Moss, Surgeon-in-Chief at Nationwide Children’s Hospital in Columbus, Ohio. During the episode, Dr. Moss discusses: * The two surgical options, laparotomy and perinatal drainage, commonly used to treat NEC * His current research of biomarkers (indicators) that can predict the development or course of NEC leading to surgery * Genetic predisposition and environmental risk factors of NEC * Not-for-profit and industry funding for biomedical research, and some of the inherent challenges specific to NEC * The complementary roles of clinical/translational research and basic science research in the prevention and treatment of NEC. Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. This episode was produced in part by the TeacherCast Educational Broadcasting Network. [powerpress] Additional Information You can make a donation directly to Dr. Moss' research in NEC at Nationwide Children’s Hospital by visiting http://www.nationwidechildrens.org/giving Note: Donors should write Moss NEC Research in the comments section of the online form. Or, you can mail a check to: Nationwide Children’s Hospital FoundationPO Box 16810Columbus, OH 43216-6810 Note: Donors should include a note or write Moss NEC Research on the memo line of their check. Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. The opinions expressed in Speaking of NEC: Necrotizing Enterocolitis (the Podcast series) and by The Morgan Leary Vaughan Fund are published for educational and informational purposes only, and are not intended as a diagnosis, treatment or as a substitute for professional medical advice, diagnosis and treatment. Please consult a local physician or other health care professional for your specific health care and/or medical needs or concerns. The Podcast series does not endorse or recommend any commercial products, medical treatments, pharmaceuticals, brand names, processes, or services, or the use of any trade, firm, or corporation name is for the information and education of the viewing public, and the mention of any of the above on the Site does not constitute an endorsement, recommendation, or favoring by The Morgan Leary Vaughan Fund.

More on Surgical NEC - Perspectives from Dr. R. Lawrence Moss

What is NEC?

Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, these podcasts are one-on-one conversations with relevant NEC experts—neonatologists, clinicians and researchers—that highlight current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure.

Surgical NEC

Stephanie shares how her son Morgan’s experience with Necrotizing Enterocolitis was the catalyst for not only founding The Morgan Leary Vaughan Fund but also developing and producing the Speaking of NEC: Necrotizing Enterocolitis series. Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. Welcome to Speaking of NEC: Necrotizing Enterocolitis—a free, audio podcast series about Necrotizing Enterocolitis or NEC. Produced by The Morgan Leary Vaughan Fund, and funded by The Petit Family Foundation, Speaking of NEC is a series of one-on-one conversations with relevant NEC experts—neonatologists, clinicians and researchers—that highlights current prevention, diagnosis, and treatment strategies for NEC, and the search for a cure. For more information about this podcast series or The Morgan Leary Vaughan Fund, visit our website at www.morgansfund.org Hello, my name is Stephanie Vaughan. I’m the Co-founder and President of The Morgan Leary Vaughan Fund. Welcome to our show. As a prologue to this series, I would like share with you a little bit about Necrotizing Enterocolitis, and how my son Morgan’s experience with NEC led our family to found a public charity dedicated to NEC, and in turn, develop and produce Speaking of NEC as our charity’s cornerstone educational initiative. My twin sons Shaymus and Morgan were born on October 29, 2010 at 28 weeks, one day gestation—nearly three months early— each weighing less than 2.5 pounds. At 4 days old, Morgan had to be transferred to Yale-New Haven Children’s Hospital when the doctors at Bridgeport Hospital suspected that he had developed Necrotizing Enterocolitis or NEC, an inflammatory disease that leads to necrosis or death of the intestine. Shaymus remained at Bridgeport Hospital. NEC is predominately due to prematurity and its statistics are startling: NEC is the second leading cause of death in premature infants. NEC is the 10th leading cause of infant death overall. In the United States alone, NEC occurs in approximately 25,000 babies per year. All newborn infants born preterm (before 37 weeks of pregnancy) or born with a low birth weight (less than about 5.5 pounds) are at increased risk for NEC. The smaller the infant or the more premature the delivery, the greater the risk. For very low birth weight babies like Morgan, who weigh less than about 3 pounds, the chance of developing NEC is approximately 1 in 18, and Infants with the most serious form of NEC have a 1 in 4 chance of dying. (Sources: UC Davis Health System, CDC/NCHS, APSA and NICHD.) Recently, one of the doctors at Bridgeport Hospital described NEC to me as “an inflammatory response gone haywire.” Once at Yale, Morgan underwent emergency surgery. He had one perforation in his small intestine, and five smaller areas that were about to perforate. Approximately eight inches of his small intestine were resected or removed. For his age and size, that was equal to approximately 20% of his small intestine. Immediately after Morgan’s surgery, the surgeon came into the waiting room, sat down across from my husband and me, and began to explain how the surgery went and what we could expect for Morgan’s recovery. Morgan was “very sick,” sicker than the doctors had thought, but had tolerated the surgery well and the surgeon was optimistic about his recovery. In another 6–8 weeks, Morgan would need to have a second surgery to reconnect his intestine. One of the prerequisites for the anastomosis or reconnection surgery was for Morgan to weigh at least two kilograms (4 lbs., 6.5 oz). Morgan would need to double his birth weight before the surgeon would consider operating on him again. In the interim, he would have an ostomy pouch to collect eliminated stool and gas. We felt an overwhelming sense of relief when his surgeon performed a successful reconnection surgery. And we were thrilled to bring Morgan home to his brother on Valentine’s Day 2011—three weeks past his original due date. Before coming home, Shaymus spent 85 days in the Newborn Intensive Care Unit at Bridgeport Hospital; Morgan spent a combined 109 days in the Newborn Intensive Care Unit at Bridgeport Hospital and the Newborn Special Care Unit at Yale-New Haven Children’s Hospital. They are now happy, healthy four-year-olds. Because of Morgan’s and our experience, our family founded The Morgan Leary Vaughan Fund (Morgan’s Fund)—an all-volunteer, public charity dedicated to Necrotizing Enterocolitis. Our mission is to promote public awareness about NEC and the potentially devastating effects it can have on preemies and their families, and to advance research to prevent, diagnose, treat, and ultimately, cure NEC. Named after Morgan, it celebrates his survival, courage and strength. We know how lucky we are that Morgan not only survived but has also thrived since his bout with NEC, and this is our family’s way of paying it forward. The Morgan Leary Vaughan Fund was incorporated on Valentine’s Day 2012. It was a wonderful way to celebrate the first anniversary of Morgan's homecoming. On June 26, 2014, we reached our first major milestone when the IRS awarded us our 501(c)(3) tax-exempt status, officially making Morgan’s Fund the first public charity dedicated to Necrotizing Enterocolitis. In December 2014, we applied for a grant from The Petit Family Foundation in Plainville, Connecticut. The project for which we applied was our cornerstone educational initiative—a free, audio podcast series about NEC. In late January 2015, we were awarded the grant funding. And today, February 28, 2015— in honor of Rare Disease Day, we are launching Speaking of NEC. Immediately after Morgan’s diagnosis four years ago, we began to research NEC and its causes and outcomes. We had questions not only about his recovery, but also about what his future would hold after he came home. We quickly learned that, for as common as this dangerous and often fatal disease is in premature babies, there was very little information about NEC available online. Our search led to more questions than answers. And the questions that kept coming up were: Why don’t more people know about NEC? What is being done to prevent NEC? Who is doing research in NEC? And, where is that research being done? It is our hope that Speaking of NEC: Necrotizing Enterocolitis provides you with some answers to those critical questions. Morgan’s Fund through its support of research, and with your help, hopes to change the lives of thousands of very low birth weight babies like Morgan, who have the greatest risk for developing NEC. To learn more about Morgan’s Fund, or make a donation, visit our website at www.morgansfund.org/donate On behalf of all of the babies like Morgan, and families like ours, who have been directly affected by NEC, thank you for listening. To more information, contact us at www.morgansfund.org/itunes Copyright © 2015 The Morgan Leary Vaughan Fund, Inc. The opinions expressed in Speaking of NEC: Necrotizing Enterocolitis (the Podcast series) and by The Morgan Leary Vaughan Fund are published for educational and informational purposes only, and are not intended as a diagnosis, treatment or as a substitute for professional medical advice, diagnosis and treatment. Please consult a local physician or other health care professional for your specific health care and/or medical needs or concerns. The Podcast series does not endorse or recommend any commercial products, medical treatments, pharmaceuticals, brand names, processes, or services, or the use of any trade, firm, or corporation name is for the information and education of the viewing public, and the mention of any of the above on the Site does not constitute an endorsement, recommendation, or favoring by The Morgan Leary Vaughan Fund.

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Speaking of NEC: Necrotizing Enterocolitis"

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