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.

Thank a Caregiver!

In honor of World Prematurity Day, November 17, we are streaming thanks to the amazing caregivers who give so much for the most fragile among us. Thank you for all you do!!!

This slideshow requires JavaScript.




First Annual Thank a Caregiver Event

Thank a CaregiverSubmit your caregiver today!

On November 17, 2014, the NEC Society will host its first annual “Thank a Caregiver” event in honor of World Prematurity Day. Families from all over the world are invited to submit a photo of someone from their child’s care team (ideally a photo that includes their child, too). During the week of November 17, the NEC Society will feature a slideshow of these caregivers on the NEC Society website, as well as Facebook and Twitter. The NEC Society will also email a digital certificate of thanks to each caregiver! Photo submissions can be completed here. All photo submissions must be received by Friday, November 14, 2014.

Support the NEC Society with Goodsearch

A free and easy way to support the NEC Society!

goodsearchPlease support the NEC Society by using Goodsearch! Sign up here to search the Internet with their Yahoo!-powered search engine (just like you’d search on any other search engine), and they will donate a penny for nearly all searches to the NEC Society. It adds up fast! Since 2005, Goodsearch has helped organizations like ours raise over $11 million. 

Your account will also allow you to support us with their sister site, Goodshop. When you shop at your favorite stores through the Goodshop portal, the NEC Society will receive a portion of the purchase price! Goodshop also works with 5,000+ stores to provide great coupons.

We need funds to operate. Your Goodshop/Goodsearch dollars will allow us to:

  • Educate families who are, or may be, impacted by NEC.
  • Advocate for NICUs to use the NEC prevention strategies that data shows us are best.
  • Encourage hospitals to develop donor milk programs. Not all moms can produce enough milk for their baby, and we know that a human milk diet (not formula) can protect fragile infants from NEC.

Please sign up for Goodsearch today. Thank you!!

-The NEC Society Team

Clifford’s Story

The NEC Society frequently shares stories of babies impacted by NEC; Clifford’s story is one.

Clifford and his mom

Clifford and his mom

We went into our 19 week ultrasound hoping to learn if our first child would be a boy or a girl, and we came out having learned that we may never meet our son. Despite a healthy pregnancy and no risk-factors, our son had a birth defect. He was diagnosed with an extremely rare abdominal lymphatic leak called congenital chylous ascites. Only a few prior cases in the world had ever been documented. His condition progressed to severe non-immune hydrops. Frequent in-utero interventions, including percutaneous fetal surgery, allowed us to maintain our pregnancy (despite pre-term labor) until 32 weeks.

When Clifford was born by emergency cesarean section, he needed immediate resuscitation, intubation, and surgical procedures. We began a very long Neonatal Intensive Care Unit (NICU) journey. He had a lot of surgeries, several life-threatening infections, countless blood transfusions, constant ventilation, and months with no food. For the first few months of his life, we were uncertain if we would ever take him home. Because his condition was so rare, there was no clear course for how to treat him. The neonatologists and pediatric surgeons at C.S. Mott Children’s Hospital began their research even before he was born. And while Clifford fought for his life in the NICU, his medical team kept brainstorming and trying different ways to help him.

Clifford’s lymphatic leak was eventually healed through a combination of surgery and medications. One drug, Octreotide, was heavily debated amongst his physicians. Its documented success in healing chyle leaks was inconsistent, and also posed the risk factor of developing necrotizing enterocolitis. It was eventually decided that Octreotide would be administered. It was one component, of many, that aided in Clifford’s chyle leaks eventually healing and finally being extubated at 3 months. However, as his medical team had cautioned, he developed necrotizing enterocolitis.

Clifford as an infant

Clifford as an infant

We were changing his diaper and noticed a small fleck of blood. We brought it to the attention of our nurse, who sent it to the lab, and paged the doctors. Our neonatologist ordered an abdominal X-ray, which confirmed her suspicion that he had necrotizing enterocolitis. Octreotide was pulled and all feeds were stopped. The necrotizing enterocolitis was caught so early that they were able to fully treat it with antibiotics and withholding food. Clifford was over 1 month gestational age when he developed necrotizing enterocolitis. The Octreotide was a necessary evil for him, and we fortunately had a medical team who acted very quickly when he presented with a symptom.

Clifford today

Clifford today

After 127 days in the NICU, Clifford finally came home. Over 3 months of pumping and freezing breastmilk while Clifford could not eat, combined with a lot of Kangaroo Care, allowed us to bring him home as an exclusively breastfed baby. We are forever thankful that extraordinary measures were taken to save Clifford’s life. He has grown into an incredibly healthy, happy, and bright boy.

A video of Clifford’s story can be viewed here.

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

Non-Profit Launches to Protect Babies from Leading Cause of Infant Death

October is Infant Loss Awareness Month

Ann Arbor, MI – With October being Infant Loss Awareness month, parents, clinicians, and researchers are launching the NEC Society, a non-profit dedicated to protecting babies from necrotizing enterocolitis (NEC). NEC is a leading cause of infant death, claiming the lives of about 500 babies every year in the U.S.

Jenn with Micah

Jennifer Canvasser with her son Micah

Two mothers who recently lost their babies to NEC spearhead the NEC Society. NEC is a life-threatening neonatal condition that causes the inflammation and death of intestinal tissue. Once diagnosed, many babies only live for a few hours or days, and survivors can have lifelong neurological and nutritional complications. Infant death due to NEC is more common than infant death due to influenza, allergies, car accidents, choking, and drop-side crib accidents combined. Yet, NEC rarely receives media attention and has never benefited from a compelling prevention campaign. Typically, families learn about NEC for the first time when their baby is already critically ill with the disease.

Jennifer Canvasser, founder of the NEC Society, explains, “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. It happened so fast. During Micah’s downward spiral, I searched for resources related to NEC, but there was no organization committed to protecting infants from this disease.”

In addition to the approximately 500 infant deaths annually in the U.S., thousands more infants are impacted by NEC that results in extensive surgeries, lengthy hospitalizations and life-long complications. Despite medical advancements, the NEC mortality rate has not improved in over thirty years. The NEC Society believes the status quo is unacceptable. Research has shown that there are ways to help prevent this devastating disease, but lack of prioritization, funding and awareness have hindered meaningful progress.

The NEC Society seeks to close the gap between best practices and what is actually happening in neonatal intensive care units (NICUs) across the country. The NEC Society wants to see hospitals, policymakers, and the public prioritize this common, costly, and deadly neonatal disease.

The NEC Society will not stop fighting until fragile infants are best protected from necrotizing enterocolitis.

Erin Umberger with her daughter Sarah

Erin Umberger with her daughter Sarah

Erin Umberger, a member of the NEC Society’s Board of Directors, describes her experience, “NEC stole my daughter’s life. The loss of a child is tragic and devastating. It is a lifelong loss. A piece of yourself dies along with your child. When I lost Sarah, I had to relearn how to breathe, eat, sleep and live without her in my arms. We must come together to stop this terrible disease.”

Members of the NEC Society’s Scientific Advisory Council are among the most experienced NEC clinicians and researchers in the world. Dr. Alexander Penn, a member of the NEC Society’s Scientific Advisory Board states, “The mechanisms underlying NEC are still incompletely understood. NEC is related to the immaturity of the intestinal tract and formula feeding significantly increases the risk of developing NEC in premature infants. Our own laboratory has shown that digested formula, but not digested fresh breast milk, is highly toxic to intestinal cells lacking the protection of a mucin barrier present in mature intestines. This only reinforces the existing literature stressing the importance of an exclusive human milk diet for premature infants.”

The NEC Society is bringing together internationally recognized NEC researchers and clinicians, mobilizing NEC activists around the world, and striving to empower families of fragile infants who are at risk of being impacted by NEC. Already, the NEC Society has launched a groundbreaking international survey of families impacted by NEC to identify gaps in knowledge and communication about the disease. The NEC Society is also embarking on a campaign that will urge NICUs to ensure that all fragile infants have access to breast milk, as breast milk protects fragile infants from NEC.

While we cannot eliminate the risk of NEC, we absolutely can – and must – reduce the risks by implementing a range of preventative and protective measures. Hundreds of U.S. families lose their babies to NEC every year. The NEC Society will not stop fighting until fragile infants are best protected from necrotizing enterocolitis.


Download this article in Word format here.

Contact: Jennifer Canvasser, 408-264-4984

Big Data in the NICU

Dr. Spitzer presents "Big Data in the NICU".

Dr. Spitzer presents “Big Data in the NICU”.

The NEC Society is at the Preemie Parent Alliance Summit in Phoenix, Arizona this weekend. We just heard a great talk from Dr. Alan Spitzer with MEDNAX/Pediatrix Medical Group on “Big Data in the NICU”. Their network of NICUs cares for over 20% of the nation’s NICU patients. By maintaining and analyzing the nation’s largest database of information on patient treatments and outcomes, they have developed toolkits and protocols for treating various conditions. Since implementing these protocols, they have seen dramatic improvements in outcomes. For example, they have reduced the incidence of NEC in their network NICUs by over 40%! They also make their database available to researchers and clinicians for further study. Go big data!