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.

NEC Society to Host First U.S. NEC Conference, Made Possible by PCORI Engagement Award

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.

Infant who developed NEC

Infant who developed NEC

Although NEC is a leading cause of overall infant mortality in the United States, there has never been a U.S. conference solely dedicated to the prevention and treatment of NEC. This will change in spring of 2017, as the NEC Society has been approved for a Eugene Washington PCORI Engagement Award by the Patient-Centered Outcomes Research Institute (PCORI) to support: Necrotizing Enterocolitis Symposium: A Transdisciplinary Approach to Improved NEC Outcomes.

Jennifer Canvasser, MSW and Erin Umberger, along with the NEC Society’s scientific advisory council members, will lead the planning and implementation of this groundbreaking conference, in partnership with the University of California at Davis. Through this conference, the NEC Society will bring together the key stakeholders and leaders on NEC to develop new collaborations, new lines of research, and new protocols to help diagnose, prevent, and treat this devastating disease.

This conference will be particularly unique; it will be the first U.S. conference focused primarily on NEC, and it will be led by two mothers, Jennifer Canvasser and Erin Umberger, who each lost a child to this disease. “Jennifer and Erin have brought momentum and passion to what has been a stalemate in progress in preventing and understanding NEC. This conference is a tipping point in the neonatal community where those most affected by the disease (parents and their children) are joining with scientists and clinicians to drive meaningful change in practice and research, “ says NEC Society scientific advisory council member, Sheila Gephart, PhD, RN, from the University of Arizona College of Nursing.

The NEC conference is part of a portfolio of projects approved for PCORI funding to help develop a skilled community of patients and other stakeholders from across the entire healthcare enterprise and to involve them meaningfully in every aspect of PCORI’s work.

“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/.

If you would like to donate your time, skills or provide additional financial support for the NEC conference, please email Jennifer@necsociety.org and stay tuned for more details!

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.

Moby Wrap Giveaway!

The NEC Society is proud to continually partner with the Best for Babes Foundation to protect fragile infants from the devastating impacts of necrotizing enterocolitis (NEC) through the use of human milk (i.e. Miracle Milk!). Human milk can reduce the risks of NEC by nearly 80%! The NEC Society is honored to team up with the Best for Babes Foundation on our Miracle Milk Strolls, which raise awareness, funds, and human milk donations to help protect fragile babies from NEC.

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Jennifer wearing baby Micah in the NICU

In addition to our shared passion for human milk, the NEC Society and Best for Babes Foundation know how important it is for fragile infants to be close to their parents. Babywearing is an excellent way to keep parents with their babies, and provides countless benefits.

Recently, the Best for Babes Foundation donated a new Moby Wrap to the NEC Society to give away to a former or current NICU family. We are thrilled to gift this carrier to a family who can use it to nurture their sweet little one.

If you’d like us to gift this Moby Wrap to YOU, then read on!

We will randomly draw a name on July 15, 2015 at 8pm PST from the list of individuals who meet and agree to these five conditions:

  1. The individual must “Like” the NEC Society Facebook page and the Best for Babes Facebook page 

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    Here’s the actual Moby Wrap that will be given to a former/current NICU family!

  2. The individual must comment with “#preventNECnow” on the Moby Wrap Giveaway! Facebook post by or before July 15, 2015 7:45pm PST, to be entered into the drawing (if you write a comment, but do not include “#preventNECnow” you will not be entered into the drawing).
  3. The individual must be a parent of a baby who spent time in the NICU
  4. The individual must be willing to briefly share their NICU story with us and allow us to share their story on the NEC Society website and Facebook/Twitter pages.
  5. The individual must not ever sell the Moby Wrap. If/when the individual no longer wants the carrier, they agree to give it away to another NICU family or return it to the NEC Society so we can give it away to another NICU family.

Deepest thanks to the Best for Babes Foundation for making this giveaway possible!

Fauna’s Story: 23 week triplets and Necrotizing Enterocolitis

By Fauna Osborne, NEC Society Leadership Committee member

On April 3, 2012 our lives changed forever. I was 23 weeks 2 days pregnant and delivered triplets. Viability for survival is generally understood to start at 24 weeks. This is where our story of love, grief, hope and miracles begins.

Fauna holding her girls

Fauna holding her girls

Kylee Faith was born at 8:44am, Trinity May at 8:45am and Cayden George at 8:46am.  It was an organized chaos in the operating room. There were about twenty plus medical staff to help with the delivery. Each one seemed so calm, yet both George and I looked like deer caught in the headlights. I had already been in the hospital for a month trying to keep the babies inside. My cervix had disappeared but medical technology and an amazing OBGYN gave our babies a small chance of survival.

Amazingly, all three were breathing at delivery and so they were rushed upstairs to the NICU. Both George and I were in shock. Our lives were suddenly spinning out of control. Or whatever control we thought we had. We had been trying unsuccessfully for nine years to get pregnant and wondered why something like this would happen to a couple like us. But we did not have time to think about ourselves as we had three children that were fighting for their lives.

No one really can relate to a child or children in the NICU unless they have had the experience themselves. When we walked into our children’s room we heard constant beeps of heart monitors, the banging of oscillators and witnessed IV’s in each of their arms, feet, and even head. George is a surveyor and I am a counselor.  Both of us are very good at our jobs, however we felt completely helpless in this situation.

All three triplets were very sick, however Cayden had the longest list of problems. Heart, intestines, lungs and brain.  You name it – he had it.

Cayden George

Cayden George

Miraculously, Cayden fought and fought. Whenever the doctors thought he was going to die, he would do a complete 180 and improve greatly. We went through this for a few weeks.

Then on Wednesday, Cayden looked pretty bad. He not only had brain bleeds, which we were willing to accept, but he was also diagnosed with NEC – Necrotizing Enterocolitis. Surgeries can repair some cases, however, in our minds, Cayden was too weak. Surgery was not even considered at this point.

Fast forward to Thursday morning, May 17, 2013.  Tests were done. It did not look good. Poor Cayden’s bowels were blocked and everything looked grim. The doctors presented us with a few scenarios but ultimately it came down to quality of life. We decided to pull support.

Our grieving process, even though difficult, has been easier than most because of the circumstances: we were able to spend 44 days with our son, we were with a room full of loving individuals and we knew deep down that it was the right thing to do.  So on May 17, 2012, Cayden George passed away due to complications from NEC. One day before George’s birthday.

Fauna and her family today

Fauna and her family today

This story ends on a happy note though. Trinity and Kylee are healthy three year olds with no medications or support. This is a true miracle. These little girls are surviving 23 week triplets.

You can watch a video of this family’s story here.

NEC Society at the 2nd Annual Miracle Milk™ Stroll

On May 2, Miracle Milk Strolls were held in over 160 U.S. and Canadian Parks & Malls to raise funds, educate, & raise appreciation for the life-saving power of human milk. A human milk diet can reduce the risk of NEC by almost 80%!

Organized by Best for Babes, the Miracle Milk Stroll is a casual walk to show solidarity for this important cause. The NEC Society was thrilled to participate in a number of Strolls. Hope to see you at a Stroll next year!

NEC Society founder Jennifer Canvasser (left) at the Ann Arbor Milk Stroll.

(From left) NEC Society founder Jennifer Canvasser, son Zachary, and NEC Society Leadership Committee member Leslie Napolitano at the Ann Arbor Miracle Milk Stroll.

Ann Arbor Milk Stroll

Ann Arbor Strollers

NEC Society Leadership Committee member Katie Woolsey talking about NEC at a Miracle Milk Stroll in Washington state.

NEC Society Leadership Committee member Katie Woolsey talking about NEC at a Miracle Milk Stroll in Washington state.

Milpitas Miracle Milk Stroll

Strollers in Milpitas, CA

NEC Society Leadership Committee member Sejal Fichadia (left) at a Miracle Milk Stroll in the Pacific Northwest

NEC Society Leadership Committee member Sejal Fichadia (left) at a Miracle Milk Stroll in the Pacific Northwest

Hope you can stroll with us next year!


The NEC Society teams up with the Best for Babes Foundation on 2nd Annual Miracle Milk™ Stroll

Join us on Saturday, May 2, 2015 in U.S. and Canadian Parks & Malls for the 2nd Annual Miracle Milk™ Stroll to raise funds, awareness and human milk donations for fragile infants at risk of developing necrotizing enterocolitis.

What is the Miracle Milk™ Stroll?

The Miracle Milk™ Stroll is a casual walk to show our solidarity for a national fundraising and awareness campaign for the lifesaving power of human milk. Whether it’s delivered at the breast, by pumping or by donor, human milk IS Miracle Milk™ Register now.  Logo_white_Rhubarb-2

Human Milk Saves Lives.

Each year in the U.S., necrotizing enterocolitis (NEC) claims the lives of approximately 500 infants, making it the tenth leading cause of overall infant mortality. Thousands more babies suffer lifelong complications resulting from NEC every year. Feeding these fragile babies human milk can reduce the risks of NEC by nearly 80%. The NEC Society and the American Academy of Pediatrics recommends donor milk for fragile babies without mother’s own milk, yet 60% of NICUs do not use donor milk for their fragile infantsTo learn more, read these FAST FACTS.

The 2014 Miracle Milk™ Stroll was a HUGE success, check out this short video and then join us on May 2nd to ensure the 2015 Miracle Milk™ Stroll is just as impactful! 

There are many ways to contribute to the Miracle Milk Stroll, here’s how:

We are grateful to the 2015 Miracle Milk sponsor: Limerick Limerick logo

Limerick promotes healthy families by providing research-based breastfeeding information and products to families. They have a vision of providing all of Corporate America with their Workplace Lactation Program. The Limerick Workplace Lactation Program was created to help working mothers reach their breastfeeding goals. Based on their work with thousands of mothers, founders Patricia and Joan developed the PJ’s Comfort electric breast pump incorporating ideas gathered from working mothers.

Working Toward a NEC-free NICU

Written by Sejal Fichadia, Leadership Committee member of the NEC Society

I became active in the NEC Society through my participation in Nursing Mothers Counsel of Oregon. I’m constantly looking for ways that I can help to improve breastfeeding rates here in the U.S. The NEC Society and Nursing Mothers Counsel of Oregon both demonstrate the critical need for increased support of human milk for all infants, especially critically ill and premature infants.

Sejal at Milk Stroll

Author Sejal Fichadia and friend at a Miracle Milk Stroll, celebrating the life-saving power of human milk!

It is widely accepted that premature babies need their mother’s milk, and that human donor milk is the next best option when the mother has a compromised milk supply. Recently, I came across an abstract in Pediatrics, “A NEC Free NICU Through Breastfeeding Quality Improvement Project (QIP)” coming out of Ireland, which like the U.S. has very low breastfeeding rates. After providing virtually universal access to human milk to all fragile and premature infants, they reported zero cases of necrotizing enterocolitis in their NICU in 2013, a first in the history of their unit.

“Human milk saves lives and reduces the risks of fragile infants developing necrotizing enterocolitis.”

I’d love to see every U.S. NICU prioritize human milk for all fragile infants, and ensure that pasteurized donor milk is the second best choice for infants without mother’s own milk. Human milk saves lives and reduces the risks of fragile infants developing necrotizing enterocolitis. When human milk is properly prioritized for fragile infants, clinicians, researchers and parents can attest to the countless improved outcomes and decreased rates of rehospitalizations.

Clinicians and hospitals must value and view human milk as the lifesaving intervention that it is for fragile infants. And perhaps most importantly, parents of fragile infants must be informed on the lifesaving power of an exclusive human milk diet for their baby. The parents must be informed.

Research has shown us that the protective properties of human milk for fragile infants is dose dependent – the more human milk the better! Exclusive human milk (meaning no bovine-based fortifiers) being the safest option.

Despite existing research about best practices around human milk for fragile infants, NICUs across the country continue to give artificial milk to babies whose systems are too immature to digest and tolerate it. The risks and potential negative impacts of artificial milk for premature infants are severe and costly.

I am part of the NEC Society and the Nursing Mothers Counsel of Oregon because I want to help make human milk the norm when it comes to feeding every baby. I want to help empower parents with information so they know the lifesaving power of donor milk for fragile infants. Necrotizing enterocolitis is one of the worst diseases that threaten our NICU babies, and human milk is one of our best defenses.

In closing, I would like to share the below quote by Vince Lombardi because while human milk cannot completely 100% prevent necrotizing enterocolitis, it absolutely offers the best protection.

“Perfection is not attainable. But if we chase perfection, then we can catch excellence.”








Dr. Hair encourages moms to donate breast milk, save a baby from NEC

Dr. Amy Hair examines newborn in NICU

Dr. Amy Hair with a newborn in the NICU

Written by Roseanne Moore, Texas Children’s Hospital

What is supposed to be a joyous occasion – the birth of your baby – suddenly gives way to anxiety. While you know the next few months are critical to your premature infant’s survival, you never expect to hear this dreaded diagnosis, “Your baby has necrotizing enterocolitis.”

Texas Children’s Neonatologist Dr. Amy Hair is on a crusade to protect fragile and premature infants from necrotizing enterocolitis (NEC), a life-threatening neonatal condition that causes inflammation and death of intestinal tissue. In the worst cases of NEC, perforations develop in the intestine which may require portions of the intestine to be surgically removed.

Since the internal organs of premature infants are not fully developed, they are more susceptible to NEC, which claims the life of 500 premature infants each year in the United States. Jennifer Canvasser, a mother whose infant son died of NEC, knows this reality all too well. “My son Micah was critically ill when I first heard about NEC. In a matter of hours, Micah went from being a beautiful five-pound baby to being critically ill and intubated with cords, wires and tubes on each of his extremities.”

Micah’s tragic outcome and one from Hair’s earlier years in residency – she treated a baby who died of NEC – motivated Hair to protect premature infants from this deadly disease by encouraging nursing mothers to donate the lifesaving gift of breast milk.

“Breast milk donors are lifesavers,” said Hair. “Unlike formula derived from cow protein – which is known to increase the risk of NEC – breast milk contains antibodies and anti-inflammatory factors that protect babies against NEC and a host of bacterial infections.”

Baby Clarissa's mommy is a lifesaver! Thank you for donating milk to fragile babies!

Baby Clarissa’s mommy is a lifesaver!                                   Thank you for donating milk to fragile babies!

Hair says the most effective way to reduce the rate of NEC is by feeding infants an exclusive human milk diet, which supports the guidelines issued by the American Academy of Pediatrics. This diet consists of mother’s own milk, pasteurized donor breast milk and protein fortifiers that add calories and nutrients to human milk to help critically-ill infants grow and thrive.

Since Texas Children’s implemented its exclusive human milk feeding protocol in 2009, NEC rates in our NICU have dropped significantly from the national average of 10-12 percent to two percent. Hair attributes this remarkable decline to the generous mothers who donate their breast milk to Texas Children’s Mother’s Milk Bank, many of whom are Texas Children’s employees.

“Every ounce of donor breast milk improves neonatal outcomes in our NICU,” said Hair. “If more mothers donate their excess supply to our Milk Bank, we can ensure our tiniest, most vulnerable patients receive a constant supply of nourishment and protection to stay healthy.”

As the associate medical director of neonatal nutrition at Texas Children’s, Hair has devoted her entire research to neonatal nutrition and delivers numerous presentations each year touting the lifesaving benefits of human milk at pediatric research conferences worldwide.

She also serves as a scientific advisor to the NEC Society, a non-profit organization that was established by Canvasser to honor her son, Micah, increase awareness about the lifesaving power of human milk, and encourage more mothers to donate their breast milk to protect babies from NEC.

Dr. Hair’s call-to-action is simple: Donate breast milk and save a baby’s life.

Click Texas Children’s Mother’s Milk Bank to learn more about their donor breast milk program.




Mom Raises Awareness in Honor of Baby Boy

Kyran Alidar Liles

Sweet baby Kyran

The NEC Society frequently shares stories of babies impacted by NEC- this is Kyran’s story.

By Candace  Kyran was our rainbow baby. About six months before I conceived him I had had a miscarriage, with this and being overweight, I was labeled a high risk mother. I went in for ultrasounds and blood work at least twice a month and once I was 29 weeks along I was to report to the hospital two to three times a week for monitoring. When I was 34 weeks and 4 days along I had a monitoring appointment. I was in the room for a few hours (much longer than normal) when the nurse came in and told me my doctor wanted me to go to the labor and delivery floor because she didn’t like the readings she was seeing.

A few hours later, I was told that my baby wasn’t getting enough oxygen and I needed an emergency C-section. Calls were made and I was prepped for surgery; my husband made it in from work just as my surgery was starting. A few moments later Kyran was here, pink and screaming, nothing wrong except he was six weeks early and was just under four pounds.

The moment he was born and cleaned up the nurses fed him a bottle of formula without ever asking me if that was what I wanted. I was discouraged from breastfeeding and was told my breast milk was being fortified to help him gain weight. When he was seven days old, I received a call saying that my son had a stomach infection and I was asked if it was ok to treat him with antibiotics. Before it was even long enough to call in for a checkup I received a second call telling me he was not doing well, this continued until my mother was off work and was able to drive me to him.

I was stopped by multiple nurses telling me to prepare myself because my baby didn’t look like he did the night before. I wasn’t prepared. He was attached to breathing machines, a morphine drip, heart monitors, and other IV’s. His belly was purple; and that’s about where I broke. I waited in the hall while they did x-rays to confirm his condition. The doctor came out and told me that Kyran needed to go to the children’s hospital for surgery for intestinal perforations. While waiting for the ambulance to pick us up, Kyran’s heart rate dropped. He went into cardiac arrest right there. I was ushered out of the room while the EMT’s from the children’s hospital tried to revive him.

Kyran with his mom

Kyran with his mom

I don’t know how long I waited. Eventually someone came to tell me that he didn’t make it. I was to call my husband so we could say our goodbyes. The doctor tried his best to explain what NEC was but he wasn’t entirely informed, he said it was just a thing that happened to some preemies. Unsatisfied with that answer I did my own research. I believe all NICU staff should have proper information and be milk friendly to parents of preemies. I hope that Kyran’s story can raise awareness about this disease.

You can read other babies’ stories on our NEC Stories page.