Hope’s Story

Mom & Hope [9755343]

Hope with her mom, Kari

The NEC Society is honored to share stories of babies impacted by NEC- this is Hope’s story.

By Hope’s Mom: After over 8 years of trying and many fertility treatments our dreams finally came true and I got pregnant.  The pregnancy was going really well, I had never been happier.  At the start of my 3rd trimester I got preeclampsia and was hospitalized on bedrest.  This process had not come easy so why would I expect the remainder of my pregnancy to be easy? I would go through anything to take care of Hope – her name came very easy to us, she was our only Hope of becoming parents.

Each day in the hospital the doctors would tell us there is no cure for preeclampsia and recommended delivery. I couldn’t possibly fathom delivering her, she was only 24 weeks along and odds of survival were slim. Every day with the doctors felt like a fight. As my health started to deteriorate they put more and more pressure on us to deliver; I would not do it. We held on for 6 long weeks of hospitalization at which point the doctors said it would be more of a risk to Hope if I did not deliver her. We had made it to 30 weeks, which based on all the information and research we did, she had a great chance of surviving and thriving.

Hope was delivered via C-section on Sept. 28th 2013, she was beautiful. Hope was in the NICU because she was small and a preemie, but she was doing great. On her 10th day of life we got a call from the NICU at 2 pm telling us Hope passed her brain scan with flying colors.  We thought we were finally out of the woods and had a sense of relief.

Hope on Dad's Chest [9755341]

Sweet baby Hope with her dad

At 8 pm that evening we received another call from the NICU and my heart just sank. When we arrived she was hooked up to tubes and IV’s and she was essentially in a coma. They said she had spit-up some of her milk so they did an x-ray to ensure that no fluid had entered her lungs. What they ended up seeing on the x-ray was a “bubble” on her intestine, indicating NEC. She showed none of the typical signs of NEC, no blood in her stool, no enlarged bluish belly, etc.

She couldn’t possibly die; not after everything we had been through. She was our one and only, God couldn’t possibly be so cruel to take her away…no that thought was impossible. For the next 10 hours we essentially watched Hope slip away. They kept saying that she wasn’t responding to the typical treatment, which wasn’t anything other than giving her antibiotics and taking her food away. They said our last hope was surgery and they supposedly were getting ready to take her into surgery…but we waited and waited and they never did.

I kept praying that God would let her live and just take me instead.  I held her while we slowly watched her heart monitor beep slower and slower and then finally there was nothing. They moved us to another room so we wouldn’t disturb the other parents and babies in the NICU. As I sat in the room holding Hope – I realized this was the first time that I saw her without all of the tubes and cords attached. 2 years later it is still hard to believe our one and only child was taken from us because of this terrible disease called NEC.  A disease that to this day doctors have done very little research on and know very little about.  I can honestly say that NEC has completely ruined our lives.

From the NEC Society: Hope, you will not be forgotten. Babies like Hope are why we are committed to fighting this devastating disease. You can help by joining us or making a financial contribution.

You can read more stories of babies and families impacted by NEC on our NEC Stories page.

NEC Society Announces Full Agenda for Nation’s First NEC Symposium

The NEC Society, in partnership with the University of California at Davis, is pleased to announce the full agenda for the nation’s first symposium on necrotizing enterocolitis (NEC). The NEC Symposium will take place April 6 and 7, 2017 on the UC Davis campus, and is made possible by a PCORI Engagement Award

Modeled after the NEC Society’s values of collaboration, patient-family centered care, and innovative solutions to complex problems, the NEC Symposium will take a transdisciplinary approach to improved NEC outcomes. DSC_2747 Stakeholders from diverse backgrounds are working together to plan a conference that engages clinicians, researchers, patient-family advocates, nonprofits, and policymakers to effect change in the shared goal of reducing the incidence of NEC in fragile and premature infants.

“Our vision is to attract the most influential of leaders who are involved in the study and advancement of knowledge in the neonatal NEC community,” explains Jennifer Canvasser, MSW, founder and executive director of the NEC Society. Neonatal NEC has shown little advancement in prevention or treatment options in over five decades, and is one of the leading causes of overall infant mortality in the United States, claiming the lives of nearly 500 infants annually and impacting thousands more.

Recently, the NEC Society announced the Symposium’s keynote speakers: Dr. Michael S. Caplan, MD, Chairman of the Department of Pediatrics and Chief Scientific Officer at NorthShore University HealthSystem, and Dr. David J. Hackam, MD, PhD, Professor of Pediatric Surgery at the Johns Hopkins University and Pediatric Surgeon-in-Chief and co-Director of the Bloomberg Children’s Center of Johns Hopkins Hospital. Together, these two keynote speakers, who are internationally renowned champions for the prevention and treatment of NEC, will set the stage for the Symposium’s robust agenda, with topics including:

Animal Models of NEC | Defining NEC | Early Detection of NEC | Human Milk and NEC |  Increasing Funding for NEC Research | Innate Immunity and NEC | NEC Clinical Trials |  NEC and Neurodevelopment | NEC Prevention Checklist | NEC Registry and Biorepository | Parent Education and Involvement | Probiotics and NEC | Transfusion Associated NEC | Treatment Options for NEC

It is with great enthusiasm that the division of neonatology and the department of pediatrics at UC Davis Children’s Hospital in Sacramento join with the NEC Society in sponsoring this symposium. Dr. Mark Underwood, chief of the division of neonatology at UC Davis has been involved in NEC research for many years. “NEC is such a devastating disease. Recent discoveries suggest promising new strategies to prevent and treat NEC, but there is still much to be learned. This opportunity to bring together NEC researchers, policy makers and family-advocates to share insights and discoveries is very exciting.”

The NEC Society is grateful to the talented and dedicated clinicians, scientists and patient-advocates serving on the Symposium’s planning committee. It is an honor to host the nation’s first NEC Symposium.

This is a medical conference specifically designed for diverse clinicians, scientists and professional stakeholders. Accordingly, continuing medical education units will be available. In the coming months, the NEC Society will open the call for abstracts, release the detailed conference schedule and begin registration. Visit www.NECsociety.org for details as they become available. 

Baby Alexander Beat the Odds and Survived NEC

Written by Baby Alexander’s Mother, Alicia. 

Baby Alexander was born at 22 weeks gestation on November 17, 2014, weighing just 1 lb. 6 oz. He was given little to no chance of survival. FB_IMG_1459854431553

As his mother, I was overwhelmed and terrified, yet familiar with this scenario. Alexander was not our family’s first premature infant. Alexander’s older brother, Marco was born at 23 weeks, so I guess you could say Alexander was trying to start sibling rivalry at an early age! Before Marco was born, we suffered four miscarriages, so despite being so incredibly premature, we were overjoyed and so grateful for our babies.

From the very beginning it seemed my pregnancy was doomed because of complication after complication. Yet, Alexander kept fighting. When he was born so prematurely via c-section, he really showed us just how strong of a conqueror he truly is. I was told that if Alexander did not fight at birth, they would let him pass away peacefully in my arms. I prayed to God and my recently deceased mother-in-law for Alexander to fight, and he did.

Alexander was whisked away to the NICU, and I was left on the operating table praying for my child, and experiencing this terrifying NICU journey all over again.

Our world was rocked on Thanksgiving Day when I received a phone call saying Alexander had developed NEC and needed to be transferred to another NICU. Once he was transferred, a pediatric surgeon explained that Alex had stool leaking into his body, which caused him to develop sepsis in his blood. He would need a penrose drain in his belly.

We learned about NEC when Marco was born so prematurely. We knew how deadly NEC could be; one of Marco’s pod-mates passed away from NEC. We were terrified, and prayed every day for Alexander to heal.

Miraculously, Alexander the Great pulled through, and did not require any extensive surgeries. We were so lucky that he healed with only the penrose drain and several doses of antibiotics.

Alexander did require VP Shunt placement due to a grade 3 analex1yearshootd grade 4 brain bleed, numerous blood transfusions, surgery to correct ROP, surgery to close his PDA, and he went into acute renal failure. The acute renal failure could have killed
him, but by the grace of God he responded to the medication and started urinating again.

Today Alexander is 16 lbs. and is followed by several specialists, including neurosurgery, ophthalmology, nephrology, cardiology, and a developmental follow up clinic. He makes our family complete and we thank God that Alexander beat the many odds stacked against him. We call him “Alexander the Great,” because he is our little conqueror. Marco and Alexander are true miracles; they are our world.

Keynote Address by Dr. David J. Hackam at NEC Symposium

The NEC Society, in partnership with the University of California at Davis, is thrilled to announce Dr. David J. Hackam, MD, PhD, as the NEC Symposium’s day two opening speaker. Dr. Hackam is the Garrett Family Professor of Pediatric Surgery at the Johns Hopkins University, and Pediatric Surgeon-in-Chief and co-Director of the Bloomberg Children’s Center of Johns Hopkins Hospital. He completed his Pediatric Surgery fellowship training in Pittsburgh, and General Surgery training in Toronto, where he completed a PhD with Dr. Sergio Grinstein in cell biology.  smaller hopkins HACKAM david-2

The first national NEC Symposium will take place April 6 and 7, 2017 on the UC Davis campus, and is made possible by a PCORI Engagement Award. The Symposium is groundbreaking in that the core planning committee is comprised of a diverse group of family-patient advocates, clinicians, and researchers, who are planning a transdisciplinary conference with some of the world’s leading champions for NEC prevention.

Dr. Hackam’s clinical practice focuses on complex neonatal surgery. His laboratory is focused on unraveling the molecular mechanisms that underlie several important surgical diseases, including necrotizing enterocolitis, and seeks to develop novel therapeutic strategies to prevent or reverse the disease processes. Dr. Hackam’s team has developed techniques of intestinal stem cell isolation and culture, and is working with tissue engineers and chemists towards the development of an artificial intestine, which has been tested in large and small pre-clinical models. He is also exploring compounds naturally found in breast milk that may help premature infants fight necrotizing enterocolitis.

Dr. Hackam’s work has led to many awards and honors, the filing of several international patents, and has been funded by the National Institutes of Health. Dr. Hackam is passionate about training the next and current generation of clinician-scientists, and he is committed to excellent clinical care that is both family-centered and innovative.

Beyond being a distinguished scientist and clinician, Dr. Hackam is an advocate for patient and family-centered care, making him an ideal partner for the NEC Society. “We owe it to our patients to go beyond what’s in the textbooks, not because the information in them is not true or relevant, but because all the answers we need may not be there. The solutions to some of our most vexing quandaries are only limited by a clinician’s imagination, creativity and thirst for knowledge. We need to strive for ever-more-precise and individualized treatment, one that optimizes the effects of therapy by factoring in each patient’s genetic makeup and environmental influences,” says Dr. Hackam.

Dr. Hackam is a member of the American Surgical Association, the American Association of Physicians, the American Society of Clinical Investigation, and is the past-President of the Society of University Surgeons.

The NEC Society is grateful to the talented and dedicated clinicians, scientists and patient-advocates serving on the Symposium’s planning committee. It will be an honor to host the internationally renowned Dr. Hackam at the NEC Symposium.

In the coming months, the NEC Society will announce the Symposium’s full agenda, as well as open the call for abstracts. Visit www.NECsociety.org for details as they become available.

NICU Prize Pack Giveaway in Honor of World Prematurity Day

Prize pack-2

Just some of the items in the “Preemie Courage” prize pack that you could win for your NICU!

November is Prematurity Awareness Month and November 17 is World Prematurity Day. To celebrate the tiniest fighters and all of those working to protect them, the NEC Society is giving away a “Preemie Courage” prize pack to one deserving NICU! It’s easy to enter your favorite NICU in the drawing- just “Like” the NEC Society on Facebook and leave your NICU’s name in the Facebook post comments. A winner will be drawn at random on November 17, World Prematurity Day.

The Preemie Courage prize pack contains lots of goodies to educate and inspire NICU families and staff, including:

  • NEC education posters that highlight the importance of human milk and parent involvement
  • 4 KangarooZaks, an ergonomic device designed to facilitate safe and effective skin to skin sessions
  • “10 Things All Parents of Preemies Need to Know” educational info cards
  • “Tree of Courage” inspirational art cards
  • Board books for parents to read to their children in the NICU
  • 5 sets of “Love Rocks”, little mementos to inspire love and joy

Enter your NICU today and join us in recognizing World Prematurity Day. There’s no strong like preemie strong!

Save the Date! The NEC Society, in Partnership with UC Davis, Will Host the First National Symposium on Necrotizing Enterocolitis

Earlier this year, we announced that the NEC Society received an award from the Patient-Centered Outcomes Research Institute (PCORI) to host the first national symposium on the prevention of necrotizing enterocolitis in fragile infants. Planning is now underway, and we are thrilled to partner with the UC Davis Department of Pediatrics and Division of Neonatology.

This national symposium will be transdisciplinary, bringing together experts and leaders who have dedicated their entire careers to reducing the incidence of NEC in fragile infants. Diverse clinicians, researchers and nonprofit organizations will ensure the symposium acts as a catalyst for change, influencing care practices, research, and even public policy. NEC Conf announcement Save the Date

Clinicians, researchers, and nonprofit organizations, please save the date and consider joining us for this groundbreaking symposium:

April 6 and 7, 2017 at the UC Davis Conference Center in Northern California

Information regarding registration will be available by summer of 2016. If you would like to donate your time, skills or provide additional financial support, please email Jennifer@necsociety.org and stay tuned for more details!

The symposium aims to develop new collaborations, lines of research, and protocols to help diagnose, prevent, and treat this devastating disease. The patient-family voice, which is too often overlooked in conferences for health professionals, will be integrated throughout the symposium via featured speakers, panel presentations and the nonprofit exhibit hall.

“This project was selected for Engagement Award funding not only for its commitment to engaging patients and other stakeholders, but also for its potential to increase the usefulness and trustworthiness of the information we produce and facilitate its dissemination and uptake,” said Jean Slutsky, PCORI’s Chief Engagement and Dissemination Officer. “We look forward to following the project’s progress and working with the NEC Society to share the results.”

The NEC Society’s project and the other projects approved for funding by the PCORI Engagement Award Program were selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI’s engagement goals and objectives, as well as program criteria. PCORI has awarded nearly $9.4 million to support 49 projects to date through this program. For more information about PCORI’s funding to support engagement efforts, visit http://www.pcori.org/content/eugene-washington-pcori-engagement-awards/.

The NEC Society is a collaboration among clinicians, researchers, families and others dedicated to reducing the incidence of necrotizing enterocolitis (NEC) in fragile infants. NEC affects over 4,000 premature infants every year in the U.S. and 1/3 of the infants who develop NEC will die from the disease. The financial impact of NEC is significant, with an estimated annual cost of up to $1 billion per year. Despite focused research on NEC for over four decades, we do not fully understand why NEC occurs, when NEC occurs, how NEC occurs, or which neonates will develop the disease. This lack of progress has been especially vexing, as the incidence of NEC has been increasing over the last several decades.

PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work.

Volunteer Spotlight: Beth Schinkel

Beth SchinkelMy name is Beth Schinkel I am a NICU nurse and Registered Dietitian. My first experience with necrotizing enterocolitis (NEC) was very early in my nursing career. I took care of an extremely premature baby in the NICU who seemed to be thriving then one night during a shift he developed NEC totalis and passed away. He taught me how precious every moment is for babies and their families. I think of him and other babies like him often. My passion for helping babies has led me, with other neonatal nutrition researchers, to search for ways to improve nutrition for babies in NICUs to prevent NEC. Currently we are testing a device that removes small amounts of water from mother’s milk without heat or pressure so cow milk fortifiers can be eliminated in premature babies feedings and babies may receive nutrient rich, pure mother’s milk feedings.

The NEC Society is so grateful for our wonderful volunteers like Beth. If you would like to donate your time or talents to protect preemies, you can volunteer here.