Breastfeeding for babies in the NICU and beyond

Published by Joy Browne, PhD, PCNS, IMH-E on Sep 13, 2023

A comprehensive guide for navigating baby feeding for infants in the NICU

By Joy Browne, PhD, PCNS, IMH-E Clinical Professor of Pediatrics at the University of Colorado School of Medicine

Most expecting parents have the best intentions to breastfeed new babies. The science is clear that breast milk has the most benefits for a baby’s health even beyond the infant years. Mothers, too, reap emotional, mental and physical benefits from breastfeeding. But breastfeeding can be harder than it seems.

The challenges are even greater for parents with babies in the neonatal intensive care unit (NICU) for any number of reasons, such as medical complications, a mother’s delayed milk production or a mother’s lack of access to the baby.

That’s not to say breastfeeding babies in the NICU is impossible. With support, it certainly can be possible. And even those babies who can’t breastfeed immediately benefit from colostrum expressed at birth and skin-to-skin contact that lays a foundation for breastfeeding.

Can I breastfeed if my baby is in the NICU?

The journey of nurturing your newborn is more complex when your baby requires specialized care. One common concern is whether you can breastfeed a baby in the NICU. The answer is a resounding yes.

Breastfeeding has many benefits, especially for premature or medically fragile infants. NICUs will often actively encourage and support breastfeeding, recognizing its vital role in promoting bonding, immune system development and overall growth. While it might require extra patience and support from both you and the NICU staff, remember that you are an essential part of your baby’s care team. Your commitment to breastfeeding can provide comfort, nourishment and a sense of familiarity to your baby during this critical time.

Benefits of breastfeeding in the NICU

A mother’s breastmilk is specially designed to meet their baby’s unique nutritional needs, whether they begin their lives in the NICU or typically develop and are born at term. Babies in the NICU, especially, benefit from breastmilk for their health and development. A study in shows, “…early human milk feeding is associated with a decrease in mortality and morbidity in the Neonatal Intensive Care Unit (NICU), decreased rates of illness and rehospitalization in the first year of life and improved neurodevelopmental outcomes.”

We also know that a mother’s colostrum is a powerful protector. Many nurseries will ask mothers to express colostrum to be used for oral care and first tastes while in the NICU.

Besides breastmilk’s nutritional benefits, breastfeeding also may facilitate bonding between mother and baby, reduce a mother’s stress levels, and decrease the risk of postpartum depression.

Is bottle feeding easier than breastfeeding?

It’s commonly misunderstood that breastfeeding is harder for babies than bottle feeding. Instead, studies show in many instances that breastfeeding is easier than bottles.

  • With bottle feeding, babies may work hard to extract milk from the nipple, expending extra effort to consume their required nourishment.
  • With breastfeeding, babies can grasp, latch and regulate milk flow according to their comfort and pace. They control how much they consume and how to coordinate their sucking with breathing.

Unlike some instances of hurried bottle feeding that might involve manipulating the nipple to facilitate milk intake, breastfeeding respects the baby’s innate rhythm of sucking, breathing and swallowing.

Why skin-to-skin contact matters for babies and new moms

One of the most important benefits of early breastfeeding is skin-to-skin contact. It’s an intimate and powerful connection a mother will have with a baby. Skin-to-skin contact creates physiologic organization of both the baby’s and the mother’s bodies.

Following are some ways new babies and mothers benefit from skin-to-skin contact:

  • The mother’s body supports the baby’s temperature regulation. Once the fetus leaves its temperature-controlled environment of the uterus, the mother’s physiology heats up to ensure the baby is warm enough.
  • The mother’s breathing helps to regulate the baby’s breathing.
  • The mother secretes oxytocin, also called “the love hormone,” when the baby is nearby, supporting attachment as well as social and emotional development.

Even babies who aren’t breastfeeding can benefit from skin-to-skin interaction. In the NICU, younger and more critically ill babies are often transferred to their mother’s bodies so that the baby benefits from the mother’s ability to regulate their physiology. Skin-to-skin contact is now becoming a more standardized procedure for those babies who are stable enough to be off their mechanical support systems.

Continuing your breastfeeding journey beyond the NICU

Just because you know the benefits of breastfeeding doesn’t mean it’s easy. Having a baby in intensive care is extremely stressful – often coming after a stressful pregnancy, labor or delivery. The stress of these circumstances could interfere with successful breastfeeding, so mothers who can’t breastfeed should never feel guilty. Even with the best intentions, there are variables new mothers have to manage to be successful at breastfeeding.

All mothers – especially those with babies in the NICU – need more support for breastfeeding from policies, NICU resources and community support.

Following are some breastfeeding resources available:

  • Hospitals usually have lactation consultants on staff for in-patient support and outpatient appointments
  • LaLeche League operates in most communities.
  • The Affordable Care Act in 2011 made coverage of lactation consulting a federal requirement for mothers from the prenatal period through weaning. This includes the cost of breast pumps. If your health plan fails to provide coverage, the National Women’s Law Center has a script to use when calling a health plan.
  • SimpliFed provides a virtual baby feeding and breastfeeding support service, fully covered by health plans in all 50 states.

Continuing breastfeeding at home after discharge from the NICU

Babies in the NICU typically eat well at discharge but may have eating difficulties around two to four months. This is a period where babies’ brains are reorganizing, which leads to a change in the way they eat. It’s essential that babies get the most positive feeding experiences at this stage.

Researchers have found that by three months, babies’ brains are about 65 percent the size they’ll be in adulthood, making the period around and right after a time of huge brain growth and organization of neurons. Any unused neurons are shed. This is why early experiences impact brain organization, and lay the foundation for all behavior – including eating.

Professionals who support families after NICU discharge need more information about attending to the eating needs of these babies and their development. Educational programs about the science behind supporting babies’ transitions into their homes are essential for early intervention providers.

By understanding the benefits of breastfeeding in the NICU and beyond, parents can make informed choices that support their baby’s health journey. It’s up to everyone who supports families with new babies to make caring for them easier.

Joy Browne, PhD teaches multi-disciplines in areas of development from newborn to very young infancy, especially for babies who start their lives in intensive care. Her research has helped to develop standards of evidence-based care for infant and family centered developmental care.

On the threshold of a new school year…

Published by Jaclyn Pederson, MHI on Aug 25, 2023

Dear Friends of Feeding Matters,

If you are one of the many people embracing the return of routines, packing lunches, sports and activities, you’ve been on my mind. I am wishing you a smooth transition from lazy summer days to busy homework nights. At Feeding Matters, we are acutely aware that this time of year can bring a mix of excitement and apprehension.

Our recent consensus endeavor, a summit with leaders in the PFD and ARFID communities, also produced a mix of enthusiasm and anticipation, underscores what is core to our mission. We believe in the power of consensus and the value of uniting various perspectives to focus on what children need. Reflecting on our recent Consensus Summit in partnership with Emory University and Children’s Healthcare of Atlanta, I was reminded of the magic of collaboration. This gathering allowed Feeding Matters to dive into the challenges and solutions related to PFD and ARFID diagnoses. The collective effort of this group is propelling us toward a brighter future, and we intend to share these results with our wider community soon.

The lessons that we learned from this consensus serve as key principles that resonate within our team but that I also think might benefit us all:

  • Embracing core values: Where there is disagreement, values aren’t aligned. By bringing individuals to the table, united in their dedication to improve access to care for children and families, we found pathways to alignment.
  • Words matter: The meanings, intentions, and assumptions tied to words often vary.  As we work to provide clarity within our field, we always have to ensure that we are speaking a shared language.
  • Continuous learning: A shared commitment to always do better invites us to approach each day with open minds, ready to absorb insights from one another.
  • Challenging assumptions: Assumptions can easily take root regarding various fields, disciplines, and individuals. But only by actively questioning these assumptions can we begin to find common ground and forge meaningful connections.

While these principles have allowed us to learn and grow, they also extend to our full community.

As we stand on the threshold of a new schoolyear, we approach it with a shared commitment to collaboration and growth. Thank you for being an essential part of our community. Together, we can transform challenges into triumphs and nurture a more promising future for all children with PFD, their families, and the professionals who treat them.

In gratitude,

Jaclyn Pederson, MHI
CEO, Feeding Matters

When ‘Expert’ Advice Is Unhelpful: A Guide to Avoiding Misleading Social Media Advice on PFD

Published by Feeding Matters on Jul 17, 2023

The pitfalls of unhelpful and misleading social media advice for clinicians and caregivers and how to avoid them

Whether you’re a clinician or a caregiver, unhelpful and inaccurate content is a common pitfall for anyone following feeding therapy accounts on social media. Here’s an example that speech therapist Bri Miluk, MS, MS, CCC-SLP, CLC, owner of Pediatric Feeding Therapy, sees often.

woman on phoneA therapist with a few years of experience shares a Reel highlighting the “dangers” of using a sippy cup. With a flashy video and a viral song, the account owner warns the audience of all the negative ways a sippy cup can affect speech, feeding, swallowing and sleep. Then, instead of sippy cups, the post recommends a special straw or open cup. The author shares a link to where you can buy it and the hashtag “#ad” as well.

Not only is the information, at best, misleading, and, at worst, entirely inaccurate, but it also violates Federal Trade Commision (FTC) rules for advertising.

Miluk, who is pursuing a PhD in communication and information sciences through the University of Alabama, explains, “This kind of content uses fear-mongering to convince people to avoid something based on baseless claims.” Pointing out that there’s no evidence to show that a child using a sippy cup is going to have sleep, airway, feeding or speech difficulties, she goes on to say, “A sippy cup uses similar oral motor patterns as sucking on a pacifier, thumb or bottle, but we know that frequency and duration matter. A child doesn’t have a sippy cup in their mouth all day long.”

Social media is a powerful tool for education and community among caregivers and clinicians alike. But the onus is on the user to ensure the information obtained there is accurate and helpful.

Healthcare misinformation mixed with fear-mongering on social media makes a recipe for disaster

Richard Noel, MD, a pediatric gastroenterologist at Duke Health, has treated hundreds of patients with pediatric feeding disorder (PFD) and other pediatric GI issues. One problem he hears from caregivers gathering PFD information from social media is that content typically features only one perspective. “On social media, you only see the numerator but never see the denominator. You’re not told about when an approach fails. They always generally talk about their successes.”

When information is shared as a general recommendation, it can be particularly challenging. “Pediatric feeding disorder can have many different forms and severities. What works for one person may not work for another,” says Dr. Noel.

Knowing that social media can be full of inaccurate information and even fear-mongering has led clinicians like Miluk to spend time creating social media educational content. Miluk has built up an audience of over 24K on Instagram with content to educate clinicians about feeding therapy. Caregivers also follow her for tips, and Miluk is especially driven to dispel myths for both audiences.

Here’s a great example of how Miluk does this:

Clinicians need to gauge content on misleading social media advice

Even clinicians and students pursuing a therapy degree can fall prey to misinformation on social media. Miluk started sharing social media content, primarily on Instagram, after seeing other speech therapists promote inaccurate or misleading content. She started in 2020 by sharing evidence-based content on pediatric feeding. That evolved to trying to support clinicians and caregivers to better understand dark marketing and how misinformation is shared online. According to Business Review at Berkeley, dark marketing is highly targeted advertising that “causes the audience to think about the product more subtly.”

TikTok posts and Instagram Reels from influencers promoting a product take dark marketing to a new level. “Some of these sources are selling a method or a booklet, and you’re getting advertising disguised as a documentary,” warns Dr. Noel.

Because dark marketing is so pervasive on social media, Miluk teaches her students in university courses and clinicians online how to spot it.

“The better understanding we have of how to be informed consumers ultimately leads to better patient care,” she says.

Judging the accuracy of information on social media

visual description of what CRAAP stands for

When using social media to view healthcare information, one tool Miluk recommends considering is the aptly-named CRAAP test.

CRAAP stands for currency, relevancy, authority, accuracy and purpose. Miluk explains each letter of the acronym as follows:

Currency: Is the information timely or is it outdated?

Relevancy: Is the information relevant to you?

Authority: Who is the source of the information?

Accuracy: Is this information supported by scientific evidence?

Purpose: What is the reason this information exists? Is it to inform? Is it to sell? Is it to teach? Is it to entertain? Is it to persuade?

Best practices for clinicians using social media for pediatric feeding disorder information

Miluk and Dr. Noel recommend the following ways to access informative PFD content on social media without being misled.

Just because it’s a common refrain doesn’t make it gospel

One of Miluk’s favorite podcasts, Duped by Dr. Michelle Mazur and Maggie Patterson, has a quote she repeats often: Just because you hear something frequently doesn’t mean it’s true.

“Because of cognitive biases, when we see something repeatedly, it’s natural for our brains to believe it to be true. In reality, that doesn’t mean truthfulness,” says Miluk.

Make your intentions clear

For clinicians who promote products on social media, you need to disclose any affiliations in the post. This can’t be simply including #ad. You must clearly state that you may receive a commission on qualifying purchases. “It’s something that I wish would be normalized. An affiliation is not something to be embarrassed about. People have a right to know if you have a potential bias for something when you’re earning a profit, no matter how small,” says Miluk.

Clear disclosure on posts is required by social media channels themselves, as well as the Federal Trade Commission.

Unfollow toxic accounts

For those clinicians and caregivers who actively share on social media, one of the biggest challenges is the ability to hide behind a screen. This can create divisiveness and even be shame-inducing. “If you put something on a public forum, you should expect public replies and even public criticism, but that doesn’t mean we should be disrespectful,” Miluk says.

Miluk recommends treating your social media like your digital home. “If I wouldn’t allow someone to walk through my door and talk to me like that. Then they’re not welcome here, either.”

Advice for parents and caregivers

Caregivers should be wary of social media before adopting a new method or following advice to support children with PFD. Dr. Noel recommends the following tips:

Use your therapy provider as a sounding board

When you find new health information, bring it to your therapy provider before investing time or money into a specific method, book or video series. “You see something new on social media that looks amazing and promises to help 10 out of 10 kids with a feeding disorder. If you run it by your therapy provider, they might point out it’s not new. It works for some, but it doesn’t work for all. That’s how you get better, more realistic information for your child,” he says.

Seek information and support from advocacy organizations

Dr. Noel is a fan of and a critical professional leader for advocacy organizations like Feeding Matters. He says, as a physician, there are many questions he can’t answer because he doesn’t live with the disorder his patients’ families confront every day. Having a peer referral source is crucial. “These advocacy organizations are incredibly valuable to provide for patients’ needs that are way beyond what I do in medicine,” he says.

Technology today is moving faster than your finger can drag down to refresh. Access to this information overload is only as beneficial as the receiver’s level of skepticism. Miluk’s most important advice for using social media to find support for PFD or any other health issue is to slow down. “You have to slow down your thinking and be willing to appraise the information before feeding education on social media can be effective.”

Click here to read a blog by Miluk on why she recommends clinicians attend Feeding Matter’s annual PFD conference.

Advancing Feeding Matters: A Report from Dublin and London

Published by Jaclyn Pederson, MHI on Jul 13, 2023

Greetings, Feeding Matters Community! It’s with great pleasure that I bring you an exciting update on the summer awareness travels of the Feeding Matters team. As Feeding Matters’ CEO, I had the privilege of attending the International Family Nurses Conference alongside our Program Manager, Heidi Van der Molen. Our mission to raise awareness and enhance support for families facing pediatric feeding disorder (PFD) took center stage as we engaged with esteemed professionals, discussed key concerns, and explored opportunities for collaboration.

Hayley Estrem, PhD, RN; Heidi Van der Molen; Jaclyn Pederson, MHI at the International Family Nurses Conference

Feeding Matters’ Power of Two: Empowering Parents, Transforming Lives
During the International Family Nurses Conference in Dublin, Heidi and I had the honor of presenting on Feeding Matters’ “Power of Two” program. We shed light on the incredible impact of parent-to-parent support in the PFD community, emphasizing the significant role it plays in helping families navigate their feeding concerns. By sharing personal stories, challenges, and triumphs, we showcased the power of connections, empathy, and knowledge exchange in transforming lives. It was truly inspiring to witness the positive response and engagement from healthcare professionals and fellow attendees. If you are interested in sharing this program with your families or participating as a family member yourself, please visit our family support roadmap to learn more.

Heidi Van der Molen (left) and Jaclyn Pederson (right) presented at the International Family Nurses Conference in Dublin

Addressing Top Feeding Concerns: A Pathway to Support
As part of our presentation in Dublin, we highlighted the “top feeding concerns” that parents often encounter when they find Feeding Matters. By understanding these concerns, we aimed to equip healthcare providers and families with valuable insights into common challenges faced by children with PFD and the struggles that families often face as they work to ensure their children are growing. By sharing our expertise, resources, and evidence-based strategies, we are committed to nurturing a supportive environment that fosters positive outcomes for children with PFD.

Leading the Way with Research and Tools
Feeding Matters’ dedication to research and the development of practical tools was also showcased through our poster presentations at the conference. One poster focused on our comprehensive Feeding Matters family guide, a valuable resource for families seeking guidance on managing PFD. The family guide, available here, is a great tool to any parent on the PFD journey. The second poster highlighted our Infant and Child Feeding Questionnaire and the research to identify 6 questions to facilitate early identification of PFD. These initiatives demonstrate our commitment to bridging the gap between research and practice, ensuring that families receive the support they need.

Heidi Van der Molen with Feeding Matters poster on the Family Guide to PFD

Collaboration and Advocacy on an International Scale
In addition to the informative sessions, we had the opportunity to connect with various partners, potential collaborators, and researchers from around the world. Engaging in insightful discussions, we explored ways to advance the field of pediatric feeding disorder and promote early intervention strategies. Notably, I had a productive meeting with Natalie Morris, the Founder and CEO of the Feeding Trust in London. Our discussion focused on the growing challenges related to Avoidant/Restrictive Food Intake Disorder (ARFID) and PFD in the UK. Together, we aim to enhance awareness, understanding, and pathways for assessment and treatment in the medical professional community and families alike.

Natalie Morris, CEO & Founder of The Feeding Trust (left) and Jaclyn Pederson, CEO of Feeding Matters (right)

Looking Ahead: Our Commitment to Progress
As we reflect on the events in Dublin and London, it’s evident that Feeding Matters is playing a pivotal role in raising awareness and fostering change within the PFD community. But we know that we are not the only ones. We have been excited and grateful as we’ve seen a huge increase in presentations about PFD at major conferences across the country and world. Together, we can continue making strides towards a future where every child has the opportunity to thrive.

Feeding Matters’ journey to Dublin and London has been a great chance to talk about PFD, build partnerships, and focus on collaboration and research. Through our impactful presentations, informative posters, and meaningful conversations, we have expanded our network, shared our expertise, and advocated for improved support systems for families facing pediatric feeding disorder. As we move forward, we are more determined than ever to drive positive change, empower parents, and advance the field of PFD so that all children with PFD will thrive.