Overturning insurance denials for PFD

Published by Feeding Matters on Sep 20, 2023

One mom with insider insurance experience shares how she managed to get coverage, plus a sample call script and an appeal template

Navigating insurance coverage for pediatric feeding disorder (PFD) exacerbates the challenges of dealing with a complex medical diagnosis. The ICD-10 code that made PFD an official diagnosis meant getting the green light from insurance is significantly more straightforward today. But many families still face insurance denials.

Anyone who’s ever spent time on hold with an insurance call center or repeated a medical story multiple times to different agents knows how frustrating these calls are. Managing insurance bureaucracy while parenting a child with PFD is exhausting.

Stages of overwhelm are typical for families of children with PFD. Parents of young children in general are often sleep-deprived and stretched thin while balancing parenthood, work and life. Add multiple clinical appointments and round-the-clock feeding sessions to the mix, and it’s no wonder PFD parents are stressed.

mom smiling with child who has a feeding tube and pacifier

How one mom overturned an insurance appeal to for an important treatment

Emily Adams, mother of 6-year-old Morgan and a long-time insurance insider with USI, shares how she battled insurance denials and offers tips for other families.

Morgan had severe reflux as a baby and only ate from a bottle in her sleep. Despite “dream-feeding” all night, she continued to lose weight. At 1.5 she got an NG tube to get the nutrition she needed.

Eventually, Morgan’s reflux improved with the proper medication. Emily then searched for a feeding program that would repair her toddler’s relationship with food. Finding the perfect program at Nationwide Children’s in Columbus, Ohio and securing a spot there was a feat of its own. Getting insurance to pay for it proved just as challenging.

child with feeding tube sitting at a table and smiling

Morgan at that point didn’t have an official diagnosis because the ICD 10 code was not yet established. Clinicians had to get creative with billing codes for Morgan’s therapy sessions. It wasn’t unusual for United Healthcare to deny them. That meant Emily was used to appealing denials by figuring out what code to use and then having Morgan’s clinicians resubmit them.

This came to a head one Monday morning when Emily and Morgan prepared to temporarily move to Columbus to enroll in Nationwide Children’s outpatient feeding program. There was a two-year waitlist for the spot. It was then that the family learned their insurance wouldn’t preauthorize coverage.

Emily, who works in the insurance industry, managed to identify the insurance broker for her husband’s employer. Emily knew she recommended that the insurance agency deny their claim. She reached out and realized the broker assumed the cost would be exorbitant and the need wasn’t great. “Nobody has any idea what the expense is for each of these children because they all need different types of care at different stages,” she says.

Emily explained that the cost of not covering the program would be much higher if Morgan continued to need an NG tube and years of therapy. She convinced the broker to recommend the approval. “It was very last minute and very stressful. I’m in the industry and know how the game is played, so it was extra frustrating to see this happening to my kid,” she says.

child standing and pointing to a display of donuts

6 tips for insurance appeals

Emily recommends the following tips for navigating insurance denials.

1. Be a fierce advocate for your family and child. When the insurance company denies coverage, insist that you’re not accepting no as an answer.

2. Speak to different people. Talk to your employer’s human resources department to find out how to reach the company broker. Explain to them about the treatment and the cost exposure. They may assume that the costs to treat your child are much more than they are. Present a budget of what your kid needs and what the expenses are.

3. Have a peer buddy who’s navigated this before.

4. Let a family member or friend go to important appointments with you. “In fight or flight mode, you’re not thinking clearly. You may not recognize the whole picture and miss a big piece of information,” says Emily.

5. Take detailed notes. “We hear things differently when we’re in stressful situations,” says Emily. A notebook to refer back to meant she could better advocate for her daughter.

6. Lean on your provider to help you advocate for coverage. Many hospitals have a patient advocate or liaison to help families navigate benefits and the appeal process.

child wearing a winter coat and beanie

When calling your insurance company, here’s a sample conversation Emily recommends using:

I know you don’t understand the complexities of my child’s condition. She needs speech and language pathology, occupational therapy, feeding therapy with a dietitian, pediatric psychologists and nurse practitioners to deal with this illness. Delaying care can delay my child’s progress and make it more expensive.

I need your help getting me to someone who can help all those codes appropriately process. Can you connect me to someone who has a better understanding of billing for complex conditions?

I’ll stay on the phone until you figure this out.

Navigating insurance for a child with PFD is frustrating, but it’s not impossible. Like so much of parenting, says Emily, “You have to be a fierce mama bear, talk to different people and make someone listen to you.”

Click here to download more information about your right to appeal an insurance denial and access a sample appeal letter template for PFD.

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.

Focus on Food Safety

Published by Anna Busenburg, RD, CSP, LD, CLC on Sep 05, 2023

This blog post is published as part of a paid partnership between Feeding Matters and Reckitt Mead Johnson Nutrition. Learn more about our corporate partnership program and ethical standards for collaboration.

There are many opinions on using human milk or infant formula when it comes to feeding your baby. Most of the focus goes into what is being fed to your child, but less emphasis is placed on the safety of how feedings are prepared. Unless you are directly breastfeeding your child, you need to consider food safety when preparing infant bottles or tube feedings.

This focus on food safety has been front and center over the last couple of years since infant formula recalls have been in the news. These recalls occurred due to microorganism contamination concerns in a manufacturing facility. Food safety matters and is why liquid ready-to-feed or concentrated formulas undergo a heat treatment that sterilizes the product. Powder formulas are not sterilized, which poses an additional risk for contamination when incorrectly handled and prepared. The Food and Drug Administration (FDA) is the regulatory and enforcement authority over the manufacturing and distributing of infant and pediatric formulas. It is important to consider food safety when preparing both infant formula (< 12 months old) and pediatric formulas (> 12 months old) being fed via a bottle or a feeding tube.

For families preparing pediatric feedings at home, it is important to remember these safety tips:

  • properly wash your hands
  • clean/sanitize feeding equipment and preparation space
  • store prepared feedings appropriately
  • follow the recipe from your provider

Practicing good hand washing techniques helps to diminish the risk of transmitting germs. Make sure that hands are washed for a full 20 seconds with soap and water. Proper handwashing is the #1 method of preventing the spread of germs for your child.

When bottles or pump parts are being used, cleaning them regularly is essential. It is also recommended to sterilize these components in the microwave or dishwasher. Any child that has complex medical conditions has increased susceptibility to infection. Steps to clean and sterilize equipment are crucial for these children’s overall health.

Any time you mix up formula – those feedings are good to use for 24 hours. Make sure that you label and note of when feedings are mixed and store in the refrigerator until it is time for the feeding. This includes recipes of human milk fortified with formula or formula only recipes. When warming infant feedings, never microwave. Options for warming include a bottle warmer or placing bottle in a warm water bath. When leaving the house with infant feedings, transport in a cooler with ice pack to help ensure the milk/water is kept cold to decrease risk of microbial growth.

When preparing your child’s feedings, follow the recipe on the can or given by your health care provider and check the expiration data prior to preparing. Some children need special feeding recipes to meet their growth goals. Use the scoop in the formula container or measuring utensil provided by your health care provider. Use a safe water source for mixing feedings, this can be tap water or nursery water.

Feeding your child seems like the most basic parenting task, but it can be challenging and complicated for many families. Remembering some of these guidelines of food safety can help ensure that you are doing the best for your child and keeping them safe. Click here to download and print handout from the Center for Disease Control and Prevention (CDC) our HOW TO PREPARE (

infograph about how to prepare and store powdered infant formula


1. Green Corkins, K., & Shurley, T. (2016). What’s in the Bottle? A Review of Infant Formulas. Nutrition in Clinical Practice, 31(6), 723–729.

2. Turck, D. (2012). Safety Aspects in Preparation and Handling of Infant Food. Annals of Nutrition and Metabolism, 60(3), 211–214.

3. Green Corkins, K., & Shurley, T. (2016). What’s in the Bottle? A Review of Infant Formulas. Nutrition in Clinical Practice, 31(6), 723–729.

4. CDC. (2018, May 7). Infant Formula Preparation and Storage. Centers for Disease Control and Prevention. Accessed August 8th, 2023.

Anna Busenburg, RD, CSP, LD, CLC has been a registered dietitian for the past 11 years and specializes in pediatric nutrition and specifically neonatal nutrition, working in a level IV NICU at Cincinnati Children’s Hospital Medical Center. She has covered inpatient NICU and outpatient NICU follow-up clinic patients.

She has undertaken many projects over the years to help improve patient care and cultivate a culture to support nutrition education. She has been involved in developing a process for utilizing donor breast milk in a 25-bed NICU and she was involved with leading the launch of a breast milk/formula scanning system in a 100-bed NICU. Anna is a certified specialist in pediatrics and has completed the pediatric weight management course. She obtained her Certified Lactation Counselor credential in 2019.

She authored a chapter of the book The Nutrition Communications Guide from AND published in 2020 and published an article in the Pediatric Nutrition Practice Group on RDs Involvement in Infant Feeding Preparation Rooms published in 2019. She currently serves on multiple committees for the Pediatric Nutrition Practice Group and has held various positions within AND on the state and local level. She is also a member of the American Society of Parenteral and Enteral Nutrition. When not busy with work, Anna spends her extra time and energy with her family, which includes her husband, 3 boys, and a Chihuahua.

Hoping for Magic

Published by Anna Taylor on Aug 07, 2023

I didn’t fly to Orange County for the magic of Disney. I flew there in hopes of a magic feeding therapy wand. The truth is, when your child has pediatric feeding disorder (PFD), there’s no such thing as a magic wand. Since 10 months old, we’ve tried various feeding therapists, different approaches, different foods, what feels like everything to get Levi to eat. I’m thankful that he doesn’t have a tube and he takes his calories orally, but I still wish for magic. He will drink only vanilla flavored formula, from a specific cup. He will lick a lollipop, play with food, and take some sips of danimals yogurt smoothies. All of that took over 3 years of slow progress in feeding therapy.

They don’t tell moms about this. There is no instruction manual given out when you have a baby that says, “Hey, your kid might not eat food.” And yes, I am lucky, I know I am lucky. I could be visiting children’s hospitals for much darker challenges; for that I’m immensely grateful. Yet still, I wish for magic. We are coming up on his 4th birthday and I’ve never seen my son eat a birthday cake. I would give him ice cream and cake for every meal, if only he would just eat something… anything.

The trip to Orange County didn’t result in a magic wand. He’s not yet ready for a more intensive therapy program and so we will wait and we will move forward and we will hope. Wait to see if he’s ready in the future, move forward with the current therapists and efforts that have gotten us to the point we are today, hope that one day he will lick the frosting off his birthday cake and maybe even take a bite.

A mother’s journey with PFD shines a light on research

Published by By Hayley Estrem, PhD, RN, Assistant professor at UNCW on Jul 21, 2023

I clearly remember the day a doctor’s news changed my life. After months of chasing my baby around with a bottle to eat an ounce at a time, I learned Alex has a rare chromosome disorder.

The neurologist enthusiastically delivered the devastating news, charmed that he was the first to solve the puzzle of why Alex’s development was delayed. Even as a registered nurse, I found his explanation confusing. My shock meant I couldn’t have processed the information even if it had been simple.

How NOT to support families with pediatric feeding disorder

Hayley holding Alex as a newborn, feeding him a bottle

As a healthcare professional, that day was one of many where I learned how not to support a family of children with pediatric feeding disorder (PFD). The news should have come from a genetic counselor, my husband should have been there, and it should have been shared with compassion.

The journey before learning about Alex’s disorder was a struggle as well. Although he was my first, I knew it wasn’t normal for a newborn to eat only an ounce at a time. What he took in, he spat up. His growth was slow, and at 9 months, he was neither sitting up nor crawling.

Our pediatrician told us to give it time, that I was a nervous new mom and that Alex was slow to grow because it was a difficult pregnancy, and he would catch-up. It wasn’t until we saw a different provider at 9 months that we were connected to a neurologist, geneticist and Early Intervention (EI) services. This too, was a lesson in how not to support families of children with PFD.

Armed with a diagnosis and therapy services, we hoped to help Alex eat more and get the calories he needed to grow and develop. Instead, we were told to try harder to feed him and to schedule weekly weigh-ins. A feeding tube was held over our heads like a threat, as if inserting one would signal our failure as parents.

Alex, Hayley's son, smiling as a baby

By the time Alex was 18 months and weighing only 16 pounds, I nearly begged for a G-tube. When he finally got one and started gaining weight, I couldn’t help but wonder why we were encouraged to try so hard. Why didn’t he have the nutrition he needed during such a critical developmental time?

Alex’s genetic diagnosis and the PFD that came with it became a springboard for my career. I had a choice to struggle with the question, “Why me?” or do something that would make this odyssey less painful for others.

I chose the latter.

Leading research to support families of children with PFD

After completing a master’s degree in nursing education and then a doctorate in nursing, today I research PFD and how it affects the entire family unit. I’m dedicated to fixing what we went through for others.

At the beginning of Alex’s diagnosis 15 years ago, there wasn’t common terminology among physicians and clinicians. This was a focus for my dissertation because it is a big barrier to building research and supporting families of children with PFD.

It’s why I have a big affinity for Feeding Matters, who did the work to get a PFD ICD-10 diagnosis.

Alex, Hayley's son, who is using a walker

One of the things I’ve done with our Feeding Flock Team is to develop several parent questionnaires about feeding behavior, skill, family management of feeding, and parent and family impact of feeding. For example, on a project with researchers and clinicians at Children’s Hospital of Atlanta, we are developing an assessment of the impact of intense food allergy regiments on caregivers and households.

Our goal is to provide data to clinicians and parents to help determine whether a food allergy intervention eases the psychosocial impact that food allergy has on everyday life for parents and families. For example, new oral immunotherapy treatments for food allergies require children to take a certain amount of allergenic food and have activity restrictions every day at a specific time. Is the cost-benefit worth it? Ultimately, the child still needs to avoid the food, but should have less severe reactions if exposed to small amounts unintentionally. Are there quality of life improvements for the family? We only know if we measure this.

I’ve interviewed parents as I go through the process of developing measurement tools for PFD, and I’ve heard their stories. Witnessing what others go through and being in the position to do something about it is what gives our family’s struggle meaning.

Because of our experience with feeding therapies, I learned to ask more questions. And I learned that research for PFD must be patient-centered. Only with patients who have experienced PFD and their families at the helm can research lead to better journeys and improved outcomes for the whole family.

blog author's family with her, her husband, and their three children

Pediatric Feeding Disorder to ARFID: A Young Child’s Journey

Published by Feeding Matters on Jun 26, 2023

Not long after Alexandra Marcy’s third child was born, she knew something was wrong with her eating. From the start, her daughter, Emerson, wasn’t latching properly. “I was told at the hospital that her latching would come naturally. We tried for a few days, and I knew it wasn’t normal,” she says.

It wasn’t long before Emerson’s diapers were dry.

A doula friend suggested Emerson might have a tongue tie, making it hard for her to latch. Not only did she indeed have a tongue tie, but she also had a lip tie and a buccal tie – a cheek tie that results from an abnormally tight frenum. Emerson underwent a laser procedure on all three, and Alexandra started using a nipple shield while breastfeeding.

Even then, says Alexandra, “She’d get a little bit of milk but never enough. Any time I tried to nurse her, she’d scream.”

Those early feedings began a four-year feeding journey that’s still developing today. What began as a medical feeding issue then is today a psychological issue. The Marcy family continues to navigate the uncertain path between pediatric feeding disorder (PFD) and Avoidant Restrictive Food Intake Disorder (ARFID).

Click here to read about PFD and ARFID and how the two diagnoses can overlap.

See here why misdiagnosing PFD and ARFID can do more harm than good.

Following is their story.

One young child’s journey from PFD to ARFID

Alexandra gave up on breastfeeding early and instead pumped milk for Emerson. The baby never took more than an ounce at a time. Even then, Emerson would spill milk out of her mouth and gag. Like many parents of children with PFD, Alexandra spent most of her time around the clock pumping and feeding her daughter.

Emerson also sounded congested all the time. Her pediatrician assured Alexandra this was normal.

Alexandra wasn’t convinced, and at three months, baby Emerson was breathing strangely and seemed limp. It was RSV season, but a swab and an X-ray seemed fine. But Emerson hadn’t gained weight since her previous pediatric appointment. When Alexandra returned a week later for a weigh-in, the baby lost a few ounces. The pediatrician recommended Alexandra supplement with formula. He suggested her breast milk wasn’t fatty enough. Emerson lost more weight even with formula.

They ended up at Phoenix Children’s Hospital (PCH) when Emerson was four months old. “I saw so many doctors, who all thought her breathing and eating will be fine. We were there for over a week without any answers,” says Alexandra.

It wasn’t until Alexandra, who worked in a therapy clinic, managed to connect with a feeding therapist from her team that she got some answers. She looked over Emerson’s original X-ray of her lungs from when Alexandra suspected she had RSV and saw shadows in the image. A second X-ray showed the shadowing had gotten worse since then. This was a sign the baby was aspirating.

The family turned to a gastrointestinal doctor for answers. Emerson was diagnosed with allergies and started an animos-based formula, which helped. “Still, though, she was a terrible eater. It was hard to get 4-oz. into her,” says Alexandra.

It seemed like any time Emerson would make some feeding progress with her feeding therapist, she would get an upper respiratory infection or rotavirus that would set her back.

baby with nasogastric tube
Emerson with NG tube

Emerson got an NG tube to build up her strength. The NG tube helped the baby gain weight, but Alexandra still remembers it as traumatic. “Any time it came out, I’d have to have my eight-year-old hold her down while I put it back in her. It felt crazy and sad.”

baby with nasogastric tube and singling
Emerson with her sister

Eventually, Emerson was diagnosed with:

  • Type 2 laryngeal cleft: An abnormal opening between her larynx and the esophagus that allowed food to enter her lungs

  • Tracheobronchomalacia: Her weak tracheal or bronchial tubes would collapse any time she ate or cried.

  • Dysphagia

“Finally, we had answers, but no way to fix it,” says Alexandra.

Baby with Gastrostomy Tube
Emerson with G-Tube

At eight months, Emerson transitioned to a G-tube as a long-term feeding solution. “This was so much better because I could see her beautiful face. She wasn’t gagging and throwing up,” says Alexandra.

The G-tube even helped Emerson overcome some food aversions to try solids. Alexandra added her to the months-long waiting list to get into the feeding program at PCH.

Thanks to the family’s hard work, Emerson progressed and eventually got into the feeding program. But at age three, she started to regress again. She stopped eating most of what her parents offered, accepting only four foods.

Even after three weeks in an intensive feeding therapy program at PCH, Emerson wasn’t progressing. At that point, all her medical issues had been addressed and resolved.

The hospital team suggested Emerson see a psychologist, who thought the three-year-old could have ARFID. Eventually, Emerson was diagnosed with ARFID and obsessive-compulsive disorder (OCD). She was young for both psychological diagnoses, but a child psychologist and a child psychiatrist agreed.

Emerson was treated with EMDR therapy to help her reprocess the medical trauma she experienced as a baby and toddler. “Any time she eats, she doesn’t want to feel pain, so this makes her restrictive and gives her intrusive OCD thoughts,” says Alexandra.

A psychiatrist who has worked with many children with PFD and ARFID prescribed medication, helping Emerson be more open to new foods and eat more. Things have gotten easier, but still, says Alexandra, their journey isn’t over. “She just doesn’t care about food. She doesn’t act hungry, and I have to remind her to eat.”

Emerson and her family
Emerson and her family

Alexandra hopes sharing her family’s story will help others navigate a similar path.

For more information, visit Feeding Matters’ resource page: PFD and ARFID. If you are a parent needing support, check out our family support resources


Parents’ Guide to Helping Your Baby with Slow Growth: Expert Tips and Advice

Published by Mary Anthony, RN on Mar 03, 2023

Pediatric developmental nurse answers questions on slow growth, lack of growth, weight loss

Expectant parents have all sorts of worries leading up to birth, but feeding your baby and slow growth usually aren’t among them. You assume your newborn will suck from the breast or a bottle. When this doesn’t happen easily, bringing home your baby becomes more complicated.

Babies with slow growth, lack of growth or weight loss typically spent some time in the NICU and may even have a tube to supplement feeding.

In many cases I see, parents are sent home without a feeding plan when their babies are discharged.

What causes slow growth, lack of growth or weight loss in infants

There are many reasons infants experience slow growth, lack of growth or weight loss, which can all sometimes be called failure to thrive. Common ones include:
  • Premature birth
  • Trouble latching
  • Reflux
  • Medical conditions

I’ve seen countless overwhelmed parents caring for newborns who require extra support for feeding. This is challenging in the best of circumstances when parents have a lot of help from family and friends.

It’s nearly impossible for those with fewer resources.

Families need more support

slow growth baby with bottle

First time parents are inundated with an overwhelming amount of new information. The learning curve for managing a newborn is significantly compounded when the baby has slow growth, a lack of growth or weight loss. This is often called “failure to thrive.”

Parents of these babies often lack all the tools and information they need to help their babies grow and thrive.

It’s my job in Maricopa County, Arizona to fill that gap.

In one telehealth visit, I spoke to a mom whose baby was born at 24 weeks and had an NG-tube. Through our conversation, I learned she had a formula prescription, but she didn’t have a feeding plan.

The mom didn’t know when to increase the amount of formula, when to offer oral feedings or even when to visit a gastroenterologist (GI). I helped her develop a plan and get an appointment. Her experience wasn’t unusual.

When a baby leaves the hospital with a feeding tube or after treatment for weight loss or slow growth, hospital doctors assume that pediatricians will ensure the baby’s feeding needs are met. Pediatricians assume the GI manages the feeding plan. And the GI often doesn’t see the baby for months.

More support for these families can make the transition to home easier.

In Arizona, any baby who’s in the NICU for five days or more is eligible for support from a pediatric developmental nurse for up to three years. This includes at least four visits a year in the first year.

I’ve seen firsthand how support is crucial for overwhelmed parents, especially within 14 days of discharge.

Customized care to help babies with slow growth thrive

The causes of slow growth and weight loss are many. This makes one-on-one consultations essential to diagnosing the problem and providing customized support.

In one extreme case, a baby was admitted to the hospital for feeding issues and weight loss. After discharge, I made a home visit and asked the mom to show me how she feeds the baby. She only had one bottle and a nipple caked with dried powder. This baby was sent to the hospital for feeding issues, but nobody assessed the mom to see what she was actually doing at home to feed the baby.

In another case, I met with a mom whose baby was discharged without adequate supplies for her baby’s feeding tube. She adjusted the baby’s formula and was adding her own mixes. She needed more adhesive to keep the NG-tube inserted, so she used adult Tegaderm. Still, the tube wasn’t staying in place. While they had already visited the pediatrician, the mom hadn’t communicated her challenges because she didn’t know any differently.

It’s these kinds of early struggles that can make developing pediatric feeding disorder (PFD) more likely, even for those children who outgrow their initial challenges. Getting these families access to early support can make all the difference.

How parents can improve feedings at home in cases of slow growth, weight loss or feeding tubes

How to improve feedings for slow growth

Ask for a feeding plan
Key to helping parents deal with feeding challenges is providing better instructions when children are discharged from the hospital. NICU nurses are great about showing parents how to insert the NG tube, check placement and when to call for help.

Be sure to also ask when to increase the calories, when to visit a GI and when your child no longer needs the tube.

Get emotional support
With all the focus on feeding a baby with slow growth, lack of growth or weight loss, it’s hard to focus on self care. But it’s essential.

Moms need rest and breaks, especially those who are postpartum and are double feeding – pumping and giving bottles. Rally your support among family and friends. Don’t expect to be able to handle everything alone.

Set up a treatment space in your home
If your baby has a feeding tube, it’s important to designate a treatment space. Make sure this isn’t a crib, couch or play area. This helps your baby know what to expect, rather than fear having the tube inserted at any point in the day.

Hold your baby during feedings
Whether you’re bottle feeding or tube feeding, it’s important that you hold your baby during feedings. This helps with bonding and makes your child feel more comfortable eating.

Get in touch with Feeding Matters
If you’re struggling with feeding challenges, you don’t have to walk this road alone. At Feeding Matters, we have many resources for parents to answer questions and provide social and emotional support. One of our most helpful support programs is peer to peer mentoring, Power of Two.

Ensuring parents get support for slow growth, lack of growth and weight loss is crucial to mitigating the risks of developing pediatric feeding disorder (PFD). Not all parents will have access to a pediatric developmental nurse, home health or coordinated support between their pediatrician and a GI. It’s essential that parents get the information they need from the start, before being released from the NICU.

Babies and their parents depend on it.

Mary Anthony has been a pediatric nurse for nearly 40 years and is head of the High Risk Perinatal Program for Maricopa County in Arizona.