10 Things All Parents of Preemies Need to Know

Published on the Huffington Post here.

No one plans to become a parent of a fragile infant. When a baby is born prematurely, most parents are woefully unprepared for the journey through the Neonatal Intensive Care Unit (NICU). Infants in the NICU are often so fragile that they cannot be held, fed, dressed or bathed. Parents often feel disempowered and helpless.

Throughout my pregnancy, I took excellent care of myself and did everything right, but suddenly found myself in preterm labor. When my twin boys, Micah and Zachary, were born three months prematurely, I didn’t know how to be their mommy. We were often physically separated from each other. During my time with them, I was terrified of hurting their tiny bodies. I didn’t understand the NICU language. I didn’t understand the wires, machines, alarms or numbers. I had to stand back and let others take care of my newborn twins. I could not protect them from the pokes, prods and emotional distress they endured. Needless to say, I was a mess.

Zachary was hospitalized for 91 days. Micah developed necrotizing enterocolitis (NEC), a life-threatening intestinal disease, and remained hospitalized for 299 days. By the time both of my twins were at home, I knew things that I only wish I had known from day one in the NICU.
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1. You are an integral part of your preemie’s care team. Your thoughts, feelings and observations are critically important. Speak up, respectfully. Ask questions. Voice your concerns. Share what is important to you. If you feel strongly that something is in the best interest of your baby, insist on it being that way.

2. Preemies need fresh breast milk. Preemies should receive a 100% breast milk diet. Fresh breast milk can be life-saving for fragile infantsMothers should begin pumping as soon as possible. To establish and sustain her milk supply, every mother of a preemie needs support from her partner, family, lactation consultant, and baby’s care team. When mothers’ own milk is unavailable for fragile infants, pasteurized donor breast milk is the next best optionFormula increases a preemie’s risk of developing NEC.

3. You know your preemie best. Learn your baby’s cues. Premature babies can become critically ill fast. You may know before anyone else when something just doesn’t seem right. If you sense something isn’t quite right, voice your concerns and make sure they are addressed. Watch for these subtle signs that something may be wrong:

  • Abnormally distended belly
  • Temperature instability (body temp is too high or too low)
  • Blood in stool
  • Frequent dry diapers
  • Frequent or large amounts of vomit
  • Constipation
  • Lethargic or not as responsive
  • Difficulty or change in breathing

4. Insist on having primary caregivers. A team of primary nurses who know your baby and family will help to ensure better communication and continuity of care, which increases patient safety. Take time to build a respectful, trusting relationship with your baby’s primary caregivers.

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5. Learn how to care for your preemie. Ask your baby’s nurse to teach you how to provide basic care for your preemie. Provide kangaroo care as often as you can. Preemies need to feel their parents’ touch. When you cannot kangaroo your baby, hold hands and read to him/her.

6. Pay attention to details. Keep a journal documenting your baby’s care routines, behavior, as well as his/her setbacks and accomplishments. Capture your thoughts and questions. Take notes during rounds. Do not assume the care team knows everything and will do everything right. They are human and make mistakes. If you don’t notice the mistakes, it’s possible that no one else will.

7. Become your preemie’s expert. Read and learn everything you need to know about your preemie’s health or condition. Learn the NICU language and best practices. If you’re not sure where to find credible information, ask your baby’s care team. Reach out to other NICU families. Reach out to other institutions, neonatologists or researchers if you have specific questions that your baby’s care team cannot address.

8. You are your baby’s voice. Attend rounds. Do not let anyone intimidate or shame you for being your baby’s advocate. You are not annoying. You are not stupid. You are not going to jeopardize your baby’s care. Your baby needs you to speak up for him/her, respectfully.

9. Create a haven of peace and healing. Leave behind your frustrations and fears so that you can be present and tune into your baby. Make your preemie’s space your home away from home. Smile at your baby. Sing to your baby. Bring in special blankets. Hang up family photos. Play soothing music. Celebrate the smallest of milestones.

2014-06-20-DSC_2438.jpg10. Live your life fully. Having a baby in the NICU is exhausting and overwhelming. The NICU journey may feel like it’s never going to end, but it will be over soon. For better or worse, you’ll never have this time back. Live it fully, without regrets. Make hand and footprints. Read special books to your baby. Take pictures and videos with your baby, even if s/he is critically ill. Savor this time with your baby.

Tragically, baby loss is a real thing for many NICU families. If you’ve experienced this tragic loss, seek the support of the baby loss community. If you know a family who has lost a baby, check out this list: 6 Things to Never Say to a Bereaved Parent.

Parents of preemies need support from their family and community. If you know a family with a baby in the NICU, insist on showing them some love. A community of love and support will help parents be the best advocates, nurturers and champions for their precious little ones.

Meet Brentlee: a full-term baby impacted by NEC

Written by Amber, Brentlee’s mom.a7

It was an uneventful pregnancy. I had a little more stress than usual, but nothing I couldn’t handle. The delivery was uneventful as well. A scheduled C-section at 39 weeks. She came out crying and we took her home after two days. Something just didn’t seem right, though. She was unable to hold down breast milk, so the pediatrician and I decided she must be lactose intolerant like her sister was, so we swapped her to formula after two weeks. At 3 ½ weeks, she still hadn’t made any progress, so I took her in to discuss another formula change. Once at the Pedi, they discovered she was running a 100.4 fever. Just enough to send us over to the local ER for a workup.

Once in the ER they ran their routine test and discovered something going on inside of her little belly. We were flown to Children’s Medical Center in Dallas and the roller coaster began. Once there, the doctors uttered the words Necrotizing Enterocolitis, or NEC. It was all a blur, nothing made sense.

Weren’t we just home all snuggled in bed?

NEC, typically affects premature infants, but there are rare cases like Brentlee’s when the disease affebrentleects full-term infants. The NEC that affects full-term infants appears to be of a different etiology than the NEC that affects preemies.

Brentlee required surgery to remove some of her bowel that died, and we spent 98 days in the NICU, which was the most scary, humbling roller-coaster ride we had ever been on. Unfortunately, NEC claims the lives of nearly 500 U.S. infants each year, but we were lucky enough to keep our little angel. NEC was just the beginning of our long journey. Once in the NICU she also contracted enterobacter and klebsiella through her central line, staph, rhinovirus, and she developed a blood clot in one of her main veins. She was unable to absorb the nutrition she needed, so she had to have a feeding tube.

What should have been the most awful, miserable 3 months, ended up being the most humbling experience of our lives. Through all of the set-backs and discouragement we found light in her smile. She never gave up, no matter the circumstance, so we never did either. Brentlee is the strongest, most courageous little girl I have ever met. Most people wait a lifetime to meet their hero, and I gave birth to mine.

When Mother’s Milk Was All I Had to Give

Posted from: http://www.huffingtonpost.com/jennifer-canvasser/when-mothers-milk-was-all-i-had-to-give_b_5414804.html

I’ve been exclusively pumping breast milk for over two years. Neither of my twins could nurse at birth because they were born incredibly fragile at 27 weeks gestation. I managed to establish a milk supply for twins by relying solely on a breast pump.

Micah and Zachary were born via emergency c-section, each weighing just over two pounds. I did not see my babies when they were born. They were taken out of my body and whisked away to the NICU to fight for their lives. Intense fear and guilt clouded feelings of happiness.

In the OR recovery area, I begged my nurse to bring me a breast pump. I had never even seen a breast pump. I just knew I needed to start making milk for my very premature twins. My nurse refused to bring me a breast pump. She said I’d need to wait until I got to my private room. I begged, explaining how important it was for me to establish my milk supply for my tiny babies.

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Hours later, when my breast pump finally arrived, I began the routine of pumping for 20 minutes every two hours around the clock. I didn’t make a single drop of milk in over 24 hours. My twins’ care team explained that if my milk didn’t come in soon, my premature babies would be fed formula. More than 48 hours after giving birth, I was so relieved when the smallest drops of colostrum dribbled down into the plastic pumping bottles.

My family supported my determination to provide breastmilk for Micah and Zachary. My husband made sure I was well-nourished and had everything I could possibly need to optimize my milk supply for our twins. My mom and closest family members took care of everything else so I could take care of my fragile twins. Support was critical to my success. Not once did my inner-circle utter a discouraging comment about my pumping schedule. As I pumped, I read up on the lifesaving power of mother’s milk for fragile infants. The more I learned about mother’s milk for fragile infants, the more determined I became to provide my twins with breast milk for as long as possible.

By the time Micah and Zachary were six weeks old, my milk supply was well-established and I had plenty of milk for both of them. But, our NICU insisted on adding a bovine-based formula-fortifier to my breast milk to boost the caloric and nutritional content. Neither of my twins responded well to the formula-fortifier, which caused them severe constipation, frequent bouts of emesis and life-threatening breathing episodes. Tragically, Micah developed necrotizing enterocolitis and became critically ill.2014-05-30-IMG_1348.JPG

I continued my round-the-clock pumping schedule, through intense uncertainty. The one way I could nurture my fragile babies was by giving them my milk. Making milk was my one source of empowerment, when all of my motherly duties and responsibilities were taken away and given to clinicians.

Throughout Micah’s 10-month hospitalization, I continued to pump milk for Micah and Zachary. Neither of my twins learned to breastfeed, so I exclusively relied on a breast pump to nourish their little bodies. Tragically, due to complications from necrotizing enterocolitis, we lost Micah when the boys were 11 months old. Despite our tragic loss, and the hell that I watched Micah endure, my body somehow managed to continue to make milk.

We just celebrated Micah and Zachary’s second birthday, and I am still exclusively pumping. When Micah was critically ill, I couldn’t hold him for four months straight. But, I could nourish him with my milk, and that was an amazing gift.

2014-05-30-DSC_5988.jpgMicah is gone, but my milk supply that I built for twins is not. I have donated breast milk to families who have adopted children and tomilk banks who pasteurize the milk for fragile hospitalized babies. Providing breast milk for my babies and other babies in need, brings me great peace. Losing a child is one of the most tragic losses anyone can experience. My heart will forever ache to have Micah back in my arms. Yet, I am blessed. In my lowest of lows, when I felt like I had nothing to give, I could still give my milk. My milk gave my babies life, other babies love, and my devastated soul, peace.

FAST FACTS: Miracle Milk™

In the context of thousands of years of human existence, human milk is ordinary just like blood or eyes are ordinary. It is only when human milk is absent, however, that it dawns on us that human milk is extraordinary human milk. Nowhere is this more true than in the context of premature birth, or newborn disease.  When a 2 lb baby is fighting for his life, human milk becomes more than ordinary . . . for sick and fragile babies, human milk is truly Miracle Milk™.  Join the 1st Mother’s Day Miracle Milk Stroll to raise awareness of the life-saving power of human milk in the NICU!  Help us get more miracle milk to more babies in the NICU.  Here are some “fast facts” about Miracle Milk™:

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  • Prematurity is the #1 killer of newborns (not including congenital malformations). 1 in 9 babies is born preterm (before 37 weeks) in the U.S., and 1 in 12 in Canada, i.e. 530,000 babies per year.  The U.S. has the highest prematurity rate of the largest industrialized nations, and is in the top 10 overall (along with Bangladesh and Indonesia) Worldwide, 15 million babies are born preterm. African American mothers are more likely to have preterm infants than any other ethnicity, the infant mortality rate among black infants in the U.S. is 2.4 times higher than that of white infants, primarily due to preterm birth. In Canada, the aboriginal preterm birth rate is as much as 1.8 times higher.
  • The American Academy of Pediatrics position on donor milk for preterm infants: “the potent benefits of human milk are such that all preterm infants should receive human milk . . . . If mother’s own milk is unavailable despite significant lactation support, pasteurized donor milk should be used.”  The Canadian Pediatric society says that “human breast milk provides a bioactive matrix of benefits that cannot be replicated by any other source of nutrition.” Both the  AAP and CPS clearly recognize the life-saving power of donor milk for preterm babies.  For premature, sick and fragile babies, human milk is truly “Miracle Milk™”.  
  • Necrotizing enterocolitis (NEC) is the #2 killer of premature babies and the #10 killer of all babies. The use of an all human milk diet can lower the risk of necrotizing enterocolitis (NEC) by 79%. NEC sickens 5,000 U.S. and Canadian premature babies per year, of which roughly 500 die from the disease.  NEC is an excruciatingly painful bowel disease which can cause parts of the intestines to die (necrosis) and need to be surgically removed.

o    One NEC surgery can cost $200,000; multiple surgeries, organ failure, and lengthy NICU stays may be required, lifelong complications and treatment may cost over  $1,000,000 per individual..

o    Compare: the cost of exclusive donor milk is typically between $700 and $2,000 per month.   (A two-pound premature baby may consume approximately 5.5 ounces per day.)  Mothers who can express some milk use less donor milk so incur far lower costs.

  • spatzquoteHuman milk also lowers the risk of late-onset sepsis (blood infections after the first week of life) and other illnesses that premature babies are susceptible to and breastfeeding or pumping speeds recovery for the mother.  Every 10 milliliters of human milk per kilogram (i.e. 0.15 ounces/pound) that a very low birth weight infant received during the first 28 days of life decreased the odds of sepsis by almost 20 percent!  Human milk is dose-dependent; any amount improves health, but the more, the better; an exclusive human milk diet has the greatest impact.
  • Donor milk can be critical in filling the gap until the mother’s milk increases in volume. Mothers who deliver early or have complications in labor experience tremendous stress and may not be able to produce milk right away for their babies despite good lactation support.  Babies may be intubated or too fragile to latch on and nurse right away (though some premature babies CAN latch on and breastfeed).
  • Yet, nearly 60% of all NICUs are not using ANY donor milk.  
  • Some NICUs do not even offer mothers of preterm babies lactation support or breast pumps, for fear of putting pressure (or guilt) on mothers who are already under stress.  However, most moms who learn that the life-saving power of breastmilk is truly like medicine for their babies are eager to breastfeed or pump. African-American mothers face greater barriers to pumping and breastfeeding and deserve culturally-appropriate support.
  • Lactation consultants (IBCLCs), peer counseling and mother-to-mother support have been shown to improve the rate of breastfeeding or pumping in the NICU.  Mother-to-mother support is directly related to increased duration of pumping in the African American community.
  • Many NICU medical directors, parents and insurance companies lack knowledge of the existence, accessibility, safety, cost-savings, and especially, LIFE-SAVING POWER of donor milk. Too many clinicians are not prioritizing human milk as a life-saving intervention which is as critical as a ventilator.  The fact that 9 of the top 10 children’s hospitals are using it in the NICU should encourage other NICUs to follow suit!
  • Donor milk suitable for use in the NICU comes from milk banks and is screened, tested and processed rigorously, just like donor blood.  In fact, at least two blood banks (one in the U.S., one in Canada) are considering opening milk banks to meet the needs of NICU babies.  
  • Very low birthweight (<1500g/3.3 pounds) babies may require the addition of a fortifier to their diet. Fortifiers add extra protein, minerals and calories to help very premature babies grow.  There are two types of fortifier: human-milk derived fortifier (only available as a commercial product in the U.S.) and non-human milk-derived fortifier.  There is not enough research on health outcome differences when adding one or the other to breast milk; however, evidence is mounting that if a fortifier is required, human-milk-derived fortifier produces better results, and that non-human-milk derived fortifiers may increase a fragile premature infant’s risk of developing NEC.  More independent, non-industry research is desperately needed!  Before adding a fortifier, it is urged that health-care providers read Breastfeeding the Premature Baby.
  • Best for Babes supports the non-profit HMBANA.org milk banks as the most financially sustainable and ethical source of donor milk for premature babies. HMBANA nonprofit milk banks dispensed 3 million ounces of milk in 2013, meeting demand from US NICUs currently using donor milk.  However, if every NICU followed the AAP recommendation (60% do not!), 9 million ounces of human milk from the mother or by donor milk would be needed every year.  Donor human milk is currently dispensed to NICUs in every state in the U.S., however if more milk banks and drop-off locations were established, shipping costs could be lowered.  All premature, sick and fragile babies deserve better and more affordable access to donor milk from a human milk bank, which is why we created the Miracle Milk Mother’s Day Stroll.

Reading Resources

March of Dimes
You think donor milk is expensive?  Wait until you see the alternative. 
How to get donor milk from a HMBANA milk bank.   
Breastfeeding the Premature Baby
Booby Traps in the NICU
How to Beat the Booby Traps in the NICU
Do Preemies Really Need Formula for Adequate Growth?
The Best Children’s Hospitals Use Donor Milk

 Peer Reviewed Articles/Resources

AAP Policy Statement on Breastfeeding and the Use of Human Milk
Unicef: Donor Breast Milk vs. Infant Formula: Systematic Review and Meta-Analysis
Pasteurized Human Donor Milk Use Among U.S. Level 3 NICUs
Impact of early human milk on sepsis and health-care costs in very low birth weight infants
Impact of necrotizing enterocolitis on length of stay and hospital charges in very low birth weight infants

Partners

HMBANA logo uslca logo (2) NECsociety ROSE_300dpi vector web (2)

Presenting Sponsors

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As the first herbal personal care and supplement line specifically designed for pregnant and breastfeeding women, Motherlove has led the holistic body care industry since its conception in 1990. Our dedication to consistent quality means crafting only the finest, purest products, and using certified organic ingredients designed to nurture, soothe and heal women on their all-important journey of nurturing life. Each of our formulas are time proven and backed with integrity, wisdom and an intimate knowledge of herbal remedies. 
Limerick logo comfortable2014 In 1992 Patricia Kelly a Registered Dietitian and Joan Ortiz a Registered Nurse (mother & daughter) founded Limerick Inc. The two were certified as Lactation Consultants in 1992.  The Limerick Workplace Lactation Program was created to help working mothers reach their breastfeeding goals.  Based on their work with thousands of mothers, Patricia and Joan developed the PJ’s Comfort electric breast pump incorporating the ideas gathered from working mothers.

Special thanks to Jennifer Canvasser, Jodine Chase, Kathleen Marinelli, and Kim Updegrove for reviewing this fact sheet.

 

The original post can be found: http://www.bestforbabes.org/fast-facts-miracle-milk/

The Best Children’s Hospitals use Donor Milk

The NEC Society is committed to reducing the incidence of necrotizing enterocolitis (NEC). We strive to raise awareness, empower families, and provide information on factors that increase or decrease the risks of NEC. It is imperative that families have open, direct access to information that may impact their preemie’s risk of developing NEC.

DSC_2432Premature and vulnerable infants face an array of NEC risk factors, including very low birth weight, blood transfusions and antibiotics. Fortunately, human milk, probiotics, and standardized feeding protocols have been shown to help protect our most fragile infants from NEC. Evidence demonstrates that formula-fed infants are at a heightened risk of developing NEC, while an exclusive human milk diet offers these infants the most protection. When mother’s own milk is unavailable for premature infants, pasteurized donor breast milk is the next best option

My premature twins received care at the University of Michigan’s C.S. Mott Children’s Hospital; an institution that does not currently offer or provide their most premature and vulnerable infants with pasteurized donor milk. In my efforts to encourage Mott to provide their most fragile infants (without mother’s milk) with pasteurized donor milk, I began reaching out to other institutions. I wanted to know – what hospitals DO provide their most fragile infants (in need) with pasteurized donor milk?

I learned that the American Academy of Pediatrics’ call for all preterm babies to have pasteurized donor milk (when mother’s own milk is unavailable) is largely being ignored. Sixty percent of the nation’s NICUs do not use donor milk. It is a shame that more parents, clinicians, medical directors and hospital administrators are unaware of donor milk’s existence, accessibility, safety and life-saving powers for premature and vulnerable infants.

Recently, I called my local children’s hospitals as well as the nation’s highest ranked children’s hospitals, and asked to speak with a lactation consultant, NICU nurse practitioner, or NICU dietitian. Once connected, I asked:

“When mother’s own milk is unavailable, do you provide pasteurized donor milk to your most premature and vulnerable infants?”

I am delighted to report that many of our nation’s most prestigious institutions are providing their premature and vulnerable infants with donor milk. Unfortunately, the vast majority of institutions do not provide our most fragile infants with donor milk or an exclusive human milk diet – an intervention that offers the best protection from developing NEC.

I am proud to share that these children’s hospitals DO provide their most fragile infants with pasteurized donor milk when mother’s milk is unavailable:

Indicates institutions verified by the NEC Society. Other institutions were referred by NEC Society supporters.

ARIZONA

  • Scottsdale Shea Hospital ✅

ARKANSAS

  • Arkansas Children’s Hospital

CALIFORNIA

COLORADO

CONNECTICUT

  • Connecticut Children’s Medical Center, Hartford
  • Yale-New Haven Children’s Hospital

FLORIDA

GEORGIA

  • Dekalb Medical Center, Decatur ✅
  • Memorial Health University Medical Center, Savannah ✅

ILLINOIS

IOWA

  • University of Iowa Hospitals and Clinics

KENTUCKY

  • Kosair Children’s Hospital, Louisville

LOUISIANA

MARYLAND

MASSACHUSETTS

MICHIGAN

MINNESOTA

  • Maple Grove Hospital, Maple Grove

MISSISSIPPI

MISSOURI

MONTANA

  • Benefis Health System, Great Falls

NORTH CAROLINA

  • Levine’s Children’s Hospital, Charlotte
  • Novant Health Forsyth Medical Center, Winston Salem ✅

OHIO

OKLAHOMA

  • Children’s Hospital at Oklahoma University Medical Center

OREGON

  • Randall Children’s Hospital, Portland
  • Sacred Heart Medical Center Riverbend, Eugene

PENNSYLVANIA

SOUTH CAROLINA

  • Medical University of South Carolina

SOUTH DAKOTA

  • Avera McKennan, Sioux Falls

TENNESSEE

  • Baptist Women’s Hospital, Memphis
  • Le Bonheur Children’s Hospital
  • Methodist Le Bonheur Germantown Hospital
  • Regional One Medical Center, Memphis
  • St. Jude Children’s Research Hospital

TEXAS

VIRGINIA

  • Children’s Hospital of The King’s Daughters, Norfolk
  • Inova Loudoun Hospital, Leesburg

WASHINGTON

  •  Madigan Army Medical Center, Tacoma

WISCONSIN

  • Meriter Hospital, Madison

MULTI-STATE HEALTHCARE SYSTEMS

I am disappointed to share that these children’s hospitals DO NOT provide their most fragile infants with pasteurized donor milk when their mother’s milk is unavailable; they rely on formula, which increases their most fragile infants’ risk of developing NEC:

  • Children’s Hospital of Pittsburgh of UPMC, PA
  • Citrus Memorial Health System, FL
  • Detroit Medical Center, MI
  • Henry Ford Medical Center, MI
  • Niagara Falls Memorial Medical Center, NY
  • Seven Rivers Regional Medical Center, FL
  • University of Michigan, C.S. Mott Children’s Hospital, MI

Does your children’s hospital provide their most fragile infants with pasteurized donor milk when mother’s milk is unavailable? Let’s build a comprehnsive list that shows who’s heeding the AAP’s call for human milk for our preemies and who’sIMG_2586 altogether ignoring it and putting our most fragile infants at risk.

Too many of us can attest to NEC’s exceptionally high morbidity and mortality rates. Let’s do what we can to protect future babies. Our most vulnerable infants without mother’s milk need protection from NEC – they need access to pasteurized donor milk now. Let’s start a national, public, open conversation. All families of fragile infants deserve to know: which children’s hospitals prioritize human milk and provide their babies with the best protections from necrotizing enterocolitis?

NEC Society and Best for Babes launches 1st Nationwide Miracle Milk™ Mother’s Day Stroll to Save Lives

The NEC Society and Best for Babes® Foundation announces another first for healthier moms and babies — the 1st Nationwide Miracle Milk™ Mother’s Day Stroll . On Saturday May 10, 2014, thousands of parents, friends, family and community members, will gather in parks and malls across the U.S. and Canada to raise funds and awareness for human milk to help save the lives of 500 premature infants annually from Necrotizing Enterocolitis (NEC) – and help prevent 5000 babies each year from contracting this often deadly and painful disease.

Miracle Milk™ via feeding tube

Miracle Milk™ via feeding tube

Feeding fragile and compromised babies human milk – whether from the mother or by donor — has been shown to reduce the risk of NEC by 79%. NEC is an excruciating bowel inflammation that can require multiple surgeries to remove dead tissue, may result in organ failure, months- long neonatal intensive care unit (NICU) stays, and can cost between $200,000 to over $1,000,000 to treat. Lifelong complications and treatment may also ensue. The anguish it causes parents is indescribable.

In its most recent policy statement on breastfeeding and human milk, the American Academy of Pediatrics (AAP) states unequivocally that “the potent benefits of human milk are such that all preterm infants should receive human milk… If mother’s own milk is unavailable despite significant lactation support, pasteurized donor milk should be used.” PEDIATRICS Vol. 129 No. 3 March 1, 2012, pp. e827 -e841.

“The AAP’s call for all preterm babies to have pasteurized donor milk when mother’s own milk is unavailable is largely being ignored. Sixty percent of the nation’s NICUs do not use donor milk,” says Jennifer Canvasser, whose 11 month-old son died last year from NEC. It’s a tragedy that more parents, health care providers, medical directors and hospital administrators don’t know about donor milk’s existence, accessibility, safety and life-saving powers for babies in the NICU.” 

“Our goal with this event is to create a nationwide consumer-driven platform to raise awareness, funds and milk donations to help make human and donor milk the standard of care in NICUs everywhere to help reduce the suffering and deaths” says Best for Babes Co-Founder Danielle Rigg. “Human Milk Saves Lives. We don’t really need more science. What we need are more solutions to help more moms get more Miracle Milk™ to more fragile babies.”

Currently, the Stroll has more than 50 sites across the U.S. and Canada, with more on the way. Groups are being led by local volunteers and will gather casually in common spaces to socialize, stroll, and celebrate the human milk cause. Registration requires a donation, and anyone can make a donation even if they cannot attend. The purchase of the official event Miracle Milk™ T-shirt is optional. Donations of human milk are being accepted by HMBANA in conjunction with this event by contacting them directly at http://www.hmbana.org and mentioning the Stroll.

Proceeds benefit Best for Babes and its partners NEC Society, Human Milk Banking Association of North America (HMBANA), Reaching our Sisters Everywhere (ROSE), and the United States Lactation Consultant Association (USLCA), and will be used to fund education for parents, health care providers, medical directors and hospital administrators about the critical role of human milk and donor milk in a premature, fragile or compromised infant’s diet. The event is being generously sponsored by PJ’s Comfort breast pump maker Limerick and MotherLove Herbal Company.

Register for the Stroll, donate, or learn more.

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Miracle Milk™: Human Milk Saves Lives

The NEC Society Partners with the Best for Babes Foundation on the 1st Nationwide Miracle Milk™ Stroll

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Human milk is critical to help prevent necrotizing enterocolitis in premature infants. The NEC Society is proud to partner with the Best for Babes Foundation on the first nationwide Miracle Milk™ Stroll.

Our Miracle Milk™ Stroll aims to:

  • Raise funds. All funds from the Miracle Milk™ Stroll will be used to foster education & awareness among parents, hospital workers, and health care providers to help ensure all vulnerable infants receive human milk.
  • Increase milk donations. Our most fragile infants’ lives rely on human milk. When mother’s own milk is unavailable, donor milk is an invaluable resource. Breast milk donations are critically needed.
  • Nurture America’s understanding. Formula poses significant and dangerous risks to our most vulnerable infants. Human milk needs to be valued and prioritized to help ensure all of our most fragile infants receive breast milk.

Human Milk is Miracle Milk™. It is a complex “living” elixir of hundreds of ingredients that have the power to Save Lives, Prevent Disease, and Promote and Protect our health from birth and for a lifetime. Whether it’s delivered at the breast, by bottle or by donor, human milk is the foundation of human health, the protection under our noses, and literally, our most precious natural resource.

An average of 450 U.S. premature infants die annually, and thousands more are sickened, from necrotizing enterocolitis (NEC), a deadly disease that human milk has been shown to reduce the risk of by 79%.

Join the NEC Society for the Mother’s Day Miracle Milk™ Stroll and help us get more human milk to more of our precious babies! Let’s motivate America to appreciate the power of human milk!

Join or coordinate a Miracle Milk™ Stroll in your hometown by visiting BestforBabes.org!

The NEC Society is proud to host Miracle Milk™ Strolls in:

  • Milpitas, CA
  • Ann Arbor, MI

Want to start a Stroll near you? Email: kelly@bestforbabes.org

Ready to register?
Register for the Miracle Milk™ Stroll here and make a nominal donation to help us get more human milk to our babies!

Ready to donate milk?
Donate milk to a Human Milk Banking Association of North American milk bank as part of our Miracle Milk™ Stroll.

Ready to donate funds?
Anyone can participate in our Miracle Milk™ Stroll by making an online donation. Proceeds benefit the NEC Society, Best for Babes Foundation, HMBANA, ROSE, and USLCA for the purpose of creating education & awareness among parents, hospital workers, and health care providers to increase demand for human and donor milk for our most fragile infants.

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Necrotizing enterocolitis: a devastating digestive disease of premature babies

Dr. Jessica Madden

Dr. Jessica Madden

A friend of a friend of a friend introduced the NEC Society to a compassionate, committed neonatologist, Dr. Jessica Madden, based in Green Bay, WI. Throughout her career, Dr. Madden has witnessed NEC harm too many infants. As a neonatologist with Celiac Disease, she offers a unique and powerful perspective on the implications of what we eat…or in this case, what premature infants eat, i.e. formula, formula-based fortifiers, donor milk and mother’s milk, and how each of these increase or decrease a preemie’s risk of developing this devastating digestive disease, known as NEC.

Check out Dr. Madden’s recent post on her blog, The Patient Celiac. We greatly appreciate Dr. Madden’s dedication to premature infants and her eagerness to support the NEC Society’s mission!

“I do not see celiac disease in my practice as a neonatologist as most of my patients are born prematurely, weigh less than 5 pounds at birth, and have never eaten wheat.  That being said, I have taken care of several babies with an intestinal condition that is much worse than celiac disease. It is called necrotizing enterocolitis (or NEC) and approximately 5-10% of the smallest premature infants develop it after birth. The incidence in the neonatal population overall is 1-2%, similar the rates of celiac disease in the adult population.

Babies with NEC develop inflammation in the lining of their intestines which can lead to injury and death of segments of the small and large intestines. In the worst cases of NEC, perforations (holes) develop in the intestines and portions of the intestine have to be surgically removed. Clinical signs of NEC include abdominal distension (babies’ bellies often become large and hard like a rock), bloody stools, delayed digestion, respiratory distress, and shock.  Once NEC develops, it can progress rapidly, and 25 to 30% of babies who develop NEC die. A healthy premature infant can develop NEC and be dead within 8 to 12 hours. ID-100136056

The cause of NEC is unknown.  It usually develops after the first week of life and, in most cases, after a baby starts to receive feedings. The risk of NEC is much higher in babies who receive formula than those who receive pumped breast milk (or donor breast milk) but we do see cases of NEC in babies who have received only breast milk.  Although we are able to treat NEC medically, with bowel rest and antibiotics, we are not quite sure which bacteria are the culprits. Similar to celiac disease, emerging research is showing that NEC may be associated with an overgrowth and colonization of babies’ guts with “bad” bacteria, and probiotics are being researched as a possible way to prevent NEC in preemies.

Although there is not any known association between NEC and celiac disease, I think it’s important for us to be aware that there are other digestive diseases out there for which there is much less known than celiac disease. Although we cannot prevent celiac disease from developing, at least not yet, we are able to treat it with the gluten-free diet.  Despite our best efforts to prevent NEC (through exclusive breast milk diets), it is still occurring at alarming rates, and the treatments do not always work. NEC has many parallels with food protein-induced enterocolitis, a disease of infants and children that I wrote a post about last spring.

The NEC Society has recently been founded by the mother of a premature baby who died from NEC-associated complications in 2012.  The missions of the NEC Society include to increase awareness of NEC, empower families affected by NEC, and to, ultimately, prevent it.  Please check out their website and share it with others who may be interested and/or helped by the information on it. One of my favorite posts from their site is called “Pointers for Parents of Preemies” from February 2014.”