Ep. 0: Morgan’s Story—The Prologue to Speaking of NEC

{Speaking of NEC} album artStephanie 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. This episode was produced in part by the TeacherCast Educational Broadcasting Network.

STEPHANIE VAUGHAN, HOST:

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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6 comments on “Ep. 0: Morgan’s Story—The Prologue to Speaking of NEC
  1. Felicia Decker says:

    Our twin boys were born at 31 weeks. And one of our twins, Connor,died of NEC.He was 12 days old. It is a horrible disease!

    • Stephanie Vaughan says:

      Felicia, I am so sorry for the loss of your son Connor to NEC. Although we experienced NEC firsthand with Morgan, I can only imagine experiencing the death of a baby.

      “Speaking of NEC” is one of the many ways that Morgan’s Fund is working to increase public awareness about NEC and funding of research to end NEC.

  2. Awesome, Stephanie, this is going to be such a wonderful resource! Congrats on getting the project funded and for making it happen! I can’t wait for the future podcasts! Thanks for making this a reality. I’ll be sharing on NICU Central for sure!

    • Stephanie Vaughan says:

      Trish, thank you for sharing! We’re really excited about this new initiative.

  3. I loved the podcast! The series will really help spread awareness on NEC.