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Helping my very tiny baby thrive

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HELPING MY VERY TINY BABY THRIVE

Giving my baby the best nutrition in the NICU

When a premature baby is born, weight and gestational age are key to helping NICU staff determine what is needed to help your baby thrive. Babies born under 1,250 grams (roughly two and a half pounds) have very specific nutritional needs. Appropriate growth is a key factor to helping your preemie survive, thrive and ultimately be discharged home from the NICU.

How do I help my baby grow and thrive? Sometimes I just feel like I’m in the way.

No. Your baby’s best medicine is YOU and HUMAN MILK.

Babies 1,250 grams or less need all the help they can get! You are their strongest advocate. Nutrition itself is not just “food.” In this case, it is medicine. Extra calories and nutrients from the right sources are required for optimal growth.

Is this where I get pressured to breastfeed?

Nope. Though we do recommend working with the Lactation Consultants and Nurses to accomplish successful breastfeeding.

Colostrum (the yellowish substance that comes from the breast first) and your subsequent milk is known to provide huge unique benefits to your baby’s immune system. Human milk is the perfect medicine for these fragile infants. We understand the stress and struggle. Lactation Consultants and Nurses are there to help you, so ask for their help! If you can pump, pump away! Every drop is useful to your baby and anything you can provide now makes a difference long-term. Nurses will refer to each drop as “liquid gold.”2 Pasteurized human donor milk is available in most hospitals but you may need to request it to ensure your baby receives it.

Wait, so the team said my baby needs more?

Yes. At some point the team will add a fortifier to your milk or to the donor milk to give your preemie the extra calories, minerals and protein for adequate growth.

However, not all fortifiers are the same and this is vital for parents to understand. One fortifier is human milk-based and is made from 100% human milk. This fortifier is best if your baby is under 1,250 grams (or roughly two and a half pounds) at birth. The other type of fortifier is cow milk-based or bovine-based but called “human milk fortifier (HMF)” which is very confusing for parents. The best diet for your baby is a human milk-based fortifier when added to Mom’s milk and/ or pasteurized donor milk (an Exclusive Human Milk Diet).3

Why does this matter?

Formula or fortifiers made from cow’s milk can cause serious problems.

Formula or fortifiers made from cow’s milk (also referred to as bovine products) in babies less than 1,250 grams can lead to serious gastrointestinal problems (necrotizing enterocolitis or NEC), feeding intolerance, sepsis, increased length of stay in the NICU, and many other complications.(*see references)4

YOUR ACTION PLAN:

  • Download the Human Milk Special Edition educational material. It includes the clinical evidence and a “letter of medical necessity” that you can use to state your case. Present the letter to your physician. http://preemie.us/HumanMilkPW
  • Ask your NICU Nurse to schedule time to meet with the Nutritionist/Dietitian.
  • If you feel further action is needed, see the Charge Nurse/Nurse Director/Medical Director.
  • Consult a Neonatologist who is not affiliated with your hospital. This doctor can offer a rebuttal.
  • Lastly, ask to meet with the Hospital Administrator and/or the head of Risk Management.

QUESTIONS FOR STAFF:

  • What is my baby’s current nutrition?
  • Is my baby being fed my breast milk only? If not, is my baby receiving pasteurized human donor milk?
  • Is anything else being added to my breast milk at this time or planned to be added in the future?
  • As I understand it, because my child was born at a very low birth weight (under 1,250 grams) he/she would do best with a human milk-based fortifier, correct?
  • Do you have a human milk-based fortifier offered at this hospital?

REACH OUT TO:

Need a supportive voice to help you along the way? These preemie parent advocacy organizations want you to know that you don’t have to go this alone. Please indicate in your email that you are trying to obtain an exclusive human milk diet for your child.

References:

1 Mary Ann Liebert, Inc. “Beyond Necrotizing Enterocolitis Prevention: Improving Outcomes with an Exclusive Human Milk–Based Diet.” BREASTFEEDING MEDICINE. Volume 00, Number 0, 2016. DOI: 10.1089/ bfm.2015.0134

2 POLICY STATEMENT - “Breastfeeding and the Use of Human Milk.” PEDIATRICS. American Academy of Pediatrics. DOI:10.1542/peds.2011-3552. www.pediatrics.org/cgi/doi/10.1542/peds.2011-3552

3 M Assad1, MJ Elliott1,2 and JH Abraham1. “Decreased Cost and Improved Feeding Tolerance in VLBW Infants Fed an Exclusive Human Milk Diet. Journal of Perinatology (advance online publication), 12 November 2015; DOI:10.1038/jp.2015.168.

4 Steven A. Abrams, Richard J. Schanler, Martin L. Lee, David J. Rechtman, and the Prolacta Study Group. “Greater Mortality and Morbidity in Extremely Preterm - Infants Fed a Diet Containing Cow Milk Protein Products.” BREASTFEEDING MEDICINE, Volume 9, Number 0, 2014. DOI: 10.1089/bfm.2014.0024.

5 Chonnikant Visuthranukul, Steven A. Abrams, Keli M Hawthorne, Joseph L Hagan, Amy B Hair. “Premature Small for Gestational Age Infants Fed an Exclusive Human Milk-based Diet Achieve Catch-up Growth Without Metabolic Consequences at 2 Years of Age.” Arch Dis Child Fetal Neonatal Ed. 2018; 0:F1–F6. doi:10.1136/archdischild-2017-314547.


Dear NICU Team and Hospital:

We, [insert your name(s)] as the parents of [insert your child/ren’s name(s)] are requesting that the team provide our child/children with an exclusive human milk diet. That would include:

  • If possible, I want my baby to receive Mom’s breast milk.
  • If my breast milk is not available, I would prefer that my baby receive only pasteurized human donor milk.
  • When my baby requires fortification, I prefer only human milk-based fortifier, not bovine-based fortifier.
  • If my hospital does not have a human milk-based fortifier on hand, you have my/our permission to order this on my/our baby’s behalf.
  • If the fortifier needs to be ordered, we prefer that our child not receive any other fortification until the human milk-based fortifier is available. If anything else will be done, we respectfully request notification at least 3 days ahead of time.

Thank you,

Mom & Dad

Re:or Black NICU Familes with permission from PreemieWorld, LLC.e