What to expect before and after your child’s G-tube insertion
So, you’ve finally decided to get a G-tube for your child. Arriving at this point in your child’s feeding journey can be a relief. Others may feel some regret.
Either way, says Karen Ellis, mother of a 2.5-year-old who recently got a G-tube, getting a G-tube can make life a lot easier for children with pediatric feeding disorder (PFD) and their parents. After a minor procedure, a short recovery and months of stress-free feedings, Ellis and her family are confident they made the right decision for their son.
G-tube insertion, or gastrostomy tube insertion, is a medical procedure where a tube is placed through the abdominal wall and into the stomach. This allows caregivers to deliver nutrition and medications directly into a child’s stomach. Some kids with a G-tube use it to supplement oral feeding. Others exclusively eat and drink through the device.
Learn more about the benefits for kids with PFD of G-tubes in this blog: Does your child need a G-tube? Here’s what you need to know.
Ellis’s son, Ishan, gets most of his nutrition through the G-tube. He eats and drinks orally as well. Ellis offers insight into what parents can expect from the G-tube procedure and the few months after it.
What to expect before the G-tube procedure
Ishan had an NG tube for a longer period than typical, says Ellis. Running after an active toddler to replace the tube whenever it fell out was a constant struggle. Since birth, Ishan has struggled with eating due to gastrointestinal issues and silently aspirating. He was often sick, didn’t eat age-appropriate amounts and was slow to gain weight. His parents pushed Ishan’s providers to consider a G-tube, but they were told their son might grow out of his feeding issues.
At this stage of the PFD journey, Ellis says following your instinct as a parent is essential to advocating for your child’s needs. “They wanted to blow everything off as normal parenting or a simple therapy issue, but knowing as a parent that there continues to be something wrong means you have to keep pushing,” she says.
What gave Ellis clarity, she says, was knowing they were trying hard enough. “He was doing his best, we were doing our best, but still, something was not quite right.”
What to expect during the G-tube procedure and recovery
For Ellis, the hardest part of the G-tube procedure was knowing it was elective surgery that required hospitalization. By the time Ishan was scheduled for surgery, Ellis knew it was necessary, but she still felt they had made a choice. Ishan’s procedure and recovery both went smoothly.
Like most kids, Ishan spent one night in the hospital. Ellis says he did experience some pain that first and second day. Ishan received pain medication and lots of TLC. They held him the whole time at the hospital and watched his favorite programs.
By day three and four, Ishan was back to running around and doing his typical gymnastics flips. He returned to his normal toddler antics in less than a week. “Kids are resilient, but we tried to hold him back from too much activity right after surgery,” she says.
For two weeks, Ishan had to skip his baths and only have sponge baths. In general, swimming in the pool or ocean tends to be okay, but lakes and rivers can be problematic.
Watch the skin around the G-tube because that can start to look angry and red initially. You can learn more about feeding tube care using What You Need to Know Now: A Parent’s Introduction to Tube Feeding. This resource, also provided in Spanish, was provided by the Feeding Tube Awareness Foundation with permissions to share.
What to expect in the months after a G-tube procedure
Adjusting to G-tube feedings takes some trial and error for parents and kids. Even months later, G-tube feeding requires adjustments when a child is less hungry due to an illness or more hungry due to a growth spurt. In the beginning, says Ellis, it’s important to go low and go slow with feeds.
At first, Ishan hesitated to let anyone touch his stomach, so his parents made buttons for his favorite stuffed animals. They fashioned these themselves, but you can also buy them. Ellis showed Ishan how opening and closing the button doesn’t hurt. They spent a lot of time talking about the button and getting used to it before diving into feeding.
Ellis also spent some time getting used to feeding her son through the tube. Overfeeding can cause vomiting or an upset stomach. She keeps a towel in the car in case of any incidents. “It’s hard to guess how much a toddler wants to eat. It’s never a perfect science,” she says.
Ellis offers three tips for G-tube feeding
- Find the formula your child tolerates best. Like baby formula, G-tube formulas come with different ingredients. The Ellis family found that the vegan formula has been better for Ishan than the milk formula.
- Stay consistent with oral feeding when applicable. Ishan eats orally two times a day. They do this before tube feeding so that his stomach isn’t full.
- Use a backpack. Cute feeding backpacks allow busy toddlers to run around independently during feeding sessions. Ellis tapes the tubing to the back of Ishan’s shirt or pants so it doesn’t come out while he’s running around.
These days, Ishan is happily playing and growing, and his parents are confident they made the right decision to get a G-tube. Ellis says it’s helpful to consider the G-tube feeding experience with PFD more like a marathon than a sprint. This can be harder for parents than kids, who tend to be more resilient. “As long as the kid is pretty happy and healthy, we’re the ones who are more stressed,” she says.
For more support in your G-tube or pediatric feeding disorder journey, check out our peer-to-peer mentoring program.
When your child needs feeding therapy for pediatric feeding disorder (PFD), navigating the system to access treatment can be challenging. If your pediatrician recommends feeding therapy, the following are some tips for how to find the right match.Understand the role of feeding therapists
Feeding therapy requires additional training that neither pediatric speech and language pathologists (SLP) nor occupational therapists (OT) typically learn in graduate school. Look for a clinician who has obtained this additional training and has been mentored by another experienced feeding therapist.
Both SLPs and OTs can be qualified to provide feeding therapy. There are times when one discipline is better equipped to support your child than the other.
SLPs have extensive knowledge of swallowing, chewing and the oral motor part of feeding therapy. If your main concern for your child is choking or chewing, speech therapists are best equipped to help.
An OT is an expert in sensory issues and texture aversions. If the feeling of food in your child’s mouth, combining foods or picky eating are the issues, look for support from an OT.
Even in the initial feeding therapy evaluation, you might want to request one specialty over the other. If you’re unsure, let the intake team know your feeding concerns. They should be able to match you with the right therapist.Check your insurance benefits
In many cases when a child needs feeding therapy, the referring physician will not indicate whether the therapist should be an SLP or an OT. In some cases, though, your insurance will specify coverage for one or the other. It’s a good idea to understand your benefits before requesting a therapy intake evaluation.Set expectations from the start
To get the most out of feeding therapy, share your goals from the start. Even during the initial evaluation, it’s important that you and your child’s therapist have aligned goals. For example, if your child responds to a specific approach or personality, be sure to share that. In many cases, therapists can adjust to match your child’s needs. Part of the therapeutic use of self is learning to gauge and meet children where they are.
Feeding therapists have to be flexible. This means goals should be fluid from the start. If your child isn’t reaching their therapy goals, it’s time to adjust them. If your child has a setback, like a hospitalization, you may need to change your goals entirely.Find out how to be a partner at home
As feeding therapists, we only have one hour a week to work with a child. That’s why we typically ask parents to join us during sessions so you can continue the therapy at home. As much as parents need breaks built into the schedule, therapy is not the ideal time.Expect collaboration
From the start, feeding therapy is collaborative. During the initial evaluation, you’ll set goals and therapy expectations together with the therapist. You should also expect your therapist to work closely with any other clinicians who support your child.Know that feeding therapy is not linear
Unlike the progress you might see in speech therapy, for example, feeding therapy tends to progress at a slower pace. Overall, you’ll want to see an upward trajectory of progress in feeding therapy, but it’s normal for your child to have ups and downs. What you don’t want to see is a plateau over time.
Don’t be surprised if it takes time to see progress in feeding therapy. Some kids are slow to build rapport and feel comfortable with a therapist. If your therapist is answering your questions, being collaborative and is confident in their approach, be patient.Don’t be afraid to pivot if it’s not working out
If you’re not seeing positive progress over time or if your child’s feeding therapist isn’t a good fit, be sure to raise these concerns. In many cases, the feeding therapist can make improvements.
If results don’t improve, your child may need support from another therapist. Try switching therapists to see how your child responds. If that doesn’t help, your child may need support from another discipline entirely –– such as a gastroenterologist or a psychologist.
Consider the following questions and answers for a potential feeding therapist:
Q: How long have you been seeing and treating children with pediatric feeding disorder? A: Look for someone with at least a few years of experience.
Q: Are you familiar with the Pediatric Feeding Disorder Consensus Definition and Conceptual Framework article published in the Journal of Pediatric Gastroenterology and Nutrition? A: If not, look for someone willing to read the article.
Q: Do you have specific education and training regarding pediatric feeding disorder? A: Look for someone who has additional training to understand the issues.
When therapists finish school, they usually don’t just jump into feeding therapy. Feeding is a specialty within speech therapy and occupational therapy that requires additional training and guidance under an experienced feeding therapist.Q: Have you seen a child who’s had a similar experience?
A: Finding a therapist familiar with your child’s specific feeding challenges is important. Don’t be afraid to ask this specifically to be sure you’re comfortable with the answer.Q: Describe your overall approach to pediatric feeding disorder.
A: Look for someone who understands the medical, nutrition, feeding skill and psychosocial domains and is willing to collaborate with a multidisciplinary team.Q: How do you determine if a child is growing well? A: Look for someone who follows your child’s growth pattern, not just a standard growth chart.
Q: How do you share the results of diagnostic testing, treatment goals, and other information with me and other providers treating my child? A: Look for a practitioner who partners with professionals in other disciplines and keeps open lines of communication with them as well as with you. Make sure they are willing to provide you with copies of reports and take the time to go over reports with you.
The way pediatric feeding disorder (PFD) manifests in each child is as varied as the children themselves. But so many stories of parenting children with PFD are the same.
An infant struggles to feed and gain weight. Parents work tirelessly to feed their children and juggle medical visits. They search in the dark for a diagnosis of a complex problem they don’t understand, all while feeling alone and at fault.
Raising a child with PFD is a journey that rarely has a final destination. With the right support and care, it does get easier. This is the story of one mom of a son with PFD and how she’s gone from seeking help to supporting others.
One family’s journey with PFD
From the start, Erin Avilez’s son, Julian, struggled to breastfeed and gain weight. Her doctors were concerned about her baby’s measurements throughout her pregnancy. When her amniotic sac fluid was low, Avilez was induced at 37 weeks.
Julian was born at 5 pounds and right away had trouble sucking and taking in enough food at each feeding. Avilez switched to bottles, but Julian continued to undereat. “Within the first few months, there were already red flags that he was underweight and not getting enough nutrition,” she says.
Avilez and her husband started by switching formulas to see if Julian had some sensitivity to some ingredients. Still, they didn’t see much weight increase. Things got worse when her pediatrician sent Julian to a pediatric gastroenterologist. “That’s kind of where the horror of the story started,” she says.
Julian’s pediatrician and the GI weren’t communicating or working together and sometimes had different goals. “The GI’s only goal was for Julian to gain weight and cared less about how it affected his feeding,” says Avilez.
Julian got a nasogastric tube (NG tube) at three months old. The increase in calories made him vomit a lot, and he regularly pulled the tube out. Any time he pulled the tube out, Avilez would have to call her husband to come home from work so the two of them could force the tube back in. Insurance only covered a few tubes, making this devastating ritual even more difficult. Julian developed an oral aversion that he never had before and wouldn’t even let his parents touch his face. By seven months, Avilez insisted the NG tube be removed.
When Julian’s GI recommended a gastrostomy feeding tube (G-tube) instead, Avilez knew they needed a second opinion. Julian took some formula and solid foods orally, and Avilez thought they could build on that. A new GI at Phoenix Children’s Hospital agreed.
With a new pediatrician and GI, Julian’s doctors started working on finding a diagnosis. He was also able to join their intensive feeding therapy program. “The new GI doctor we saw listened, and he offered empathy and support,” says Avilez.
When Julian was 3.5, his family finally got a diagnosis of what caused his pediatric feeding disorder. A liquid and a food study showed that he has gastroparesis, a condition where the stomach muscles do not work properly to empty waste.
Now that Julian has a diagnosis, he’s able to take medication to help his gastric delayed emptying, as well as an appetite stimulant. He also drinks Ensure Clear to add more calories to his diet. Julian has an aversion to any formula or dairy because of his early experience with the NG tube.
In the past six months, Julian was finally registered low on the weight chart for the first time. “This is huge for him,” says Avilez.
Still, says Avilez, their struggle is never far from her mind. She dreads visits to the pediatrician when she knows Julian will be weighed. “Even today, a week before his appointments, I start getting stressed out because I know we have to get on the scale,” she says.
Finding support from other families with PFD
Julian was born during the pandemic, and Avilez left her job as a social worker to take care of him and to get to all his appointments. She suffered from postpartum depression and felt overwhelmed, alone and isolated.
“I knew there has to be some type of service out there to help moms like me,” she says.
Avilez searched online and found Feeding Matters. She requested a peer-to-peer mentor and was matched with another mom who shared her experience. That empathy was powerful. “She listened to me. The first time I got off the phone with her, I started crying that somebody understood what I was going through,” says Avilez.
Avilez’s mentor also told her she was doing a great job. “Throughout this process, nobody told me I was doing a good job, not the doctors or anyone on his care team,” she says.
Avilez’s introduction to Feeding Matters was the first time she learned about PFD. “I felt so validated that we weren’t the only ones concerned about not knowing what was going on with our son and not hearing about it from our doctor,” she says.
Today, Avilez is a peer mentor to other parents raising a child with PFD. She’s grateful to have support and to be able to pay it forward. Her hope is that more clinicians and hospitals will inform parents about PFD from the start. “I wish that when you have a child with feeding difficulties, someone from the start would offer resources,” she says.
Key takeaways for supporting your child with PFD
Avilez offers the following advice to parents raising a child with PFD.
- Find a supportive care team: If the doctor’s not listening, find a more supportive provider. Having a good team in place makes all the difference.
- Trust your instincts: It’s okay to get a second opinion and ask questions. Keep advocating for your child because you know your child best.
- Find friends, family or a peer mentor: Find someone who will listen and understand so that you feel less alone.
Reporting on our findings from researching the landscape of pediatric feeding disorder treatment
Every day at Feeding Matters, we hear stories from families and professionals of progress and struggles, of success and setbacks, of those clinicians who helped and of those who faltered.
A zigzag line along an upward trajectory of progress is typical for families of children with pediatric feeding disorder (PFD). The journey is never simple, but it’s much easier with the right support.
Ensuring that more families get the right support from the start underpins every part of our work at Feeding Matters. Whether raising awareness, advocating for better insurance coverage or common terminology, our goal is always to help every family access the feeding care their child needs.
To get there, we need more research.
Building a body of research-based evidence on children’s needs and treatment options is what we can point to when we demand better insurance coverage. Data on education pathways is how we partner with national associations to improve clinical education on feeding as a specialty. And research is how we ensure every child gets the care they need at the right time.
That’s why I’m so excited about the November 2023 study we published in the journal Child: Care, Health and Development, an international, peer-reviewed journal for pediatrics covering children’s health and development. The study, Assessing the US treatment landscape for paediatric feeding disorder: A survey of multidisciplinary providers, documented the data on what options exist for patients with PFD.
None of the findings are shocking. All of it aligned with our expectations of what we hear from families and clinicians in the field. However, data means more than anecdotal experiences when it comes to understanding the landscape of PFD treatment.
Stories move people. But they don’t always move institutions. Data does.
Now that we’ve documented what treatment is happening in communities, we can build on that research with the ultimate goal of improving patient pathways and treatment outcomes.
The goal of assessing the treatment landscape for PFD
Most children with pediatric feeding disorder are treated in the communities where they live – often by occupational therapists (OTs) and speech and language pathologists (SLPs), often through early intervention (EI). Most research about PFD in the U.S. comes from pediatric psychologists working in a small number of institutions providing multidisciplinary treatment for PFD across the United States. Spots in these programs are limited, and waiting lists are long.
This leads to a disconnect between PFD research and the treatment that most PFD patients actually receive. What’s happening on the ground in communities is different from the treatment occurring in multidisciplinary centers –– and from what’s getting researched and published.
Aiming to ensure there is a common terminology and improving treatment through partnering, we knew we needed to start by defining the treatment landscape and building an evidence base. Our goal for the study was to determine the following:
Who is treating children with PFD
What are the treatment interventions
The methodology of assessing the PFD treatment landscape
To determine the landscape for PFD in the U.S. and identify provider and treatment delivery characteristics, we collected primary data through a web-based survey targeting providers from all four PFD domains –– medical, nutritional, feeding skill and/or psychosocial between January 2022 and March 2022.
In total, 815 clinicians completed the survey from January to March 2022. Only those practicing in the U.S. –– 83% –– were included in this study. Clinicians from every U.S. state were represented.
Survey respondents answered 71 questions regarding patient, provider and treatment characteristics.
As a follow-up to the survey, we conducted focus groups to better understand PFD treatment occurring in communities throughout the U.S.
What we found by researching the PFD treatment landscape
As expected, survey results showed that most PFD treatment occurs at the community level through EI or outpatient feeding therapy rather than in multidisciplinary programs. OTs and SLPs provide most of the feeding therapy through sensory and responsive feeding. These are not well defined treatment interventions or protocols so for the purpose of this study, we defined the two as follows:Responsive feeding: Focuses on establishing positive feeding relationships and mealtime interactions which honor the child’s autonomy and need for intrinsic motivation to support developmentally appropriate feeding skills and nutritional intake. Sensory feeding: Use of systematic play-based sensory interventions to promote feeding skills and dietary diversity through graded changes in food properties and presentation.
Tracking progress varies. Goal achievement, caregiver report and clinical judgment represented the most common tracking methods reported across all providers. Less common was the reported use of standardized outcome measures, clinic-specific measures or biospecimen labs.
The most frequent length of PFD treatment was 6–12 months (37.6%), followed by 6 months or less (32.2%).
Roadmap for next steps
What’s clear from this new study and anecdotal evidence is that the relatively new field of treating pediatric feeding disorder lacks best-practice guidelines for assessing and managing PFD or even the tools to help clinicians do so. The absence of guidelines makes the triage process and medical home management for pediatricians challenging as well. Gaining a better understanding of the community treatment landscape can help to identify clearly these practice gaps and inform future research on assessment and treatment.
Achieving our goal to get every child with PFD the care they need at the right time is a massive undertaking. To help us get there, below are our organization’s goals for the next 15 years:
Establish best practices for assessing and managing PFD.
Ensure all children are screened for PFD at well visits.
Ensure children with PFD qualify for early intervention.
Define a specialty pathway for accredited PFD specialists.
PFD qualifies for Early Intervention.
Secure more federal research dollars allocated to funding.
Inclusive insurance coverage.
All of these goals depend on building greater awareness about PFD. Making sure PFD becomes a household name would open doors to more research funding, better insurance coverage and improved care.
Researching the landscape of PFD treatment underscores just how much work there is to do to ensure children with PFD get the care they need. It’s also the first step in getting there.
**TW: Eating disorders. Author has been in recovery for 15 years, and is speaking to her story as someone who has overcome it.
The holiday season is meant to be joyful, hopeful, filled with generosity and love. In particular, I’m sure one core association to the holidays is gathering around a bountiful table with your loved ones. It’s special and something most of us look forward to, maybe even spend months planning in advance.
As a recovering anorexic, I can tell you that this cherished mealtime tradition can bring on some less-than-joyful experiences. While eating disorders are separate from pediatric feeding disorders, there are areas of overlap – primarily that of the psychosocial domain. That is what I will speak to here.
I have a vivid memory of Thanksgiving 2008, when I was just fifteen. My mom spent the whole day (as one does) in the kitchen, making a beautifully roasted turkey, rolls, green bean casserole, all the fixings. And, mashed potatoes – a food that I labeled as “too fatty,” one that I simply would not allow myself to indulge in.
I sat with my family at the dinner table, having the small amount of foods that I deemed as “safe” on my plate. Everyone was talking, laughing, enjoying – except for me. I spent the entire meal – actually, the entire day, and the day before, and the day before that – thinking about the food. How I’d make it through this meal without unraveling. I was so consumed with anxiety around a meal that was supposed to be exactly the opposite. In this way, I completely understand what children with pediatric feeding disorder (PFD) go through.
I share this to build up empathy and as a reminder to all that holiday mealtimes can be challenging. Here are some suggestions I have to help your loved one who struggles with eating to maybe make their holiday experience more joyful:
• Take pressure off the meal – Find/plan other ways for them to engage with the family without the food being the “main event”
• Allow for adaptations – For children with PFD, they may need to have alternative foods served to help them stay at the table
• Let them know they’re not alone – It can be easy to feel like you’re struggling in a way no one understands. You know your child best; find a way to connect with them and remind them on anxiety-filled days that you are there for them and see their struggle.
**These suggestions should not overrule the specifications of the child’s needs according to their doctors, nutritionists, professional supports.
May your holidays be happy, your bellies be full, and your hearts even fuller.
How one physical therapist uses the Infant and Child Feeding Questionnaire to identify a child’s areas of need and how she can help
Feeding challenges never occur in a vacuum. While I’m neither a speech therapist or a feeding therapist, the Infant and Child Feeding Questionnaire® (ICFQ©) from Feeding Matters remains one of my most important assessment tools in my initial encounters with new patients.
The ICFQ was authored in partnership with internationally renowned thought leaders representing multiple disciplines related to feeding. It’s an age-specific tool designed to identify potential feeding concerns and facilitate discussion with all members of the child’s healthcare team – including physical therapists (PT).
Based on the caregivers’ responses to six questions, the ICFQ has been shown to accurately identify and differentiate pediatric feeding disorder (PFD) from picky eating in children 0-4.
Using the feeding questionnaire as a physical therapist
Whenever I meet with a new PT pediatric patient at Texas Children’s Hospital, I spend the first session speaking to the family to determine how we can help the whole child.
For example, I recently was working with a family in the plagiocephaly – head-shaping – clinic at Texas Children’s. When I asked the parent about feeding, she responded that the baby just won’t stay still to eat. That response led me to ask more questions about feeding. I learned the baby has torticollis – tightness of neck muscle that causes the baby to turn to one side. Plus, the baby was dysregulated, which could mean a neurological issue. I asked about reflux, which could be a gastrointestinal issue. I knew how to help in some areas as a PT, and I knew to refer the family to an occupational therapist and a speech pathologist.
I can’t even describe how relieved this parent was. When it came to feeding, everyone else had simply told her to “keep trying.”
While physical therapy focuses on a child’s functional mobility, no movement’s isolated from the rest of a child’s health. Movement takes mental and physical regulation. An infant requires proper nutrition to perform at their highest level. A child without enough calories doesn’t have the necessary energy to make the most progress in physical therapy – or any other therapy, for that matter.
6 feeding questions that help me identify physical therapy patients’ needs
There are six basic questions on the ICFQ that clinicians identify when a child has a feeding issue. As a physical therapist, responses to the questions highlight issues around endurance, function level and the parent’s understanding of the child’s needs.
Following are the six questions and how the responses help me as a physical therapist.
- Does your child let you know when he/she is hungry?
This question gives me insight into how well parents understand their child’s communication cues. Recognizing an infant’s or nonverbal child’s cues allows parents to know when a child is hungry, uncomfortable or tired. This communication is essential to the parent’s ability to do PT exercises at home.
- Do you think your baby/child eats enough?
Often, the responses to this question are cultural. Among the patients I see at Texas Children’s, I find some cultures expect babies and children to eat more than others. This is an opportunity to educate parents about what is typical. For those babies and children not getting enough nutrition, it’s a chance to refer them to specialists who can help.
- Do you have to do anything special to help your baby/child eat?
This question helps me gauge a baby’s stamina level. The baby may be having trouble coordinating breathing with swallowing. This tells me that in physical therapy, I need to work on the baby’s ability to open her chest out wide and back in. The goal is to increase the baby’s endurance to work for 30 minutes of exercise. That causes fatigue at the time, but it actually builds stamina for later.
A baby who doesn’t have the endurance to finish feeding isn’t likely to have the energy to make as much progress in physical therapy. This makes getting more calories into the baby especially relevant for PT.
- Do you have to do anything special to help your baby/child eat?
This question helps me determine when a baby is dysregulated. It means I need to refer to a specialist who can help the family uncover why feeding isn’t typical.
In physical therapy, I’ll determine whether the child needs to work on muscle retraction. This is one of the issues I see often in infants, especially, and sometimes even older children who are having trouble feeding. Retraction takes them away from their midline without being able to find their center again easily. This makes it difficult to eat.
As a physical therapist, I’ll work with the baby on midline rotation. We work on coordinating the movement of opening and closing the arms and chest. The baby’s shoulders should expand back and then be able to come back to center. The baby should be able to find his flexion and make symmetrical motions in the upper and lower body.
Working on the body in this way can improve feeding, supporting the therapy that speech pathologists and occupational therapists are doing as well.
- Does your baby/child let you know when he is full?
When a baby is not recognizing fullness, this indicates there might be a chronic condition. Once full, a baby should cry, turn the head, push away the breast or bottle or spit out milk. But if a baby just keeps eating, this is a cue that the family needs a referral to a specialist.
As a physical therapist, it helps me identify a baby’s level of function.
- Based on the questions above, do you have concerns about your baby/child’s feeding?
Responses to this final question provide an opportunity for education. I’ll know how much information I should give parents on typical development for their child’s age and stage.
It’s also an opportunity to encourage parents who need a referral to go ahead and make that appointment.
As physical therapists, we’re not just looking at the legs and the feet. Treating our patients means treating the whole patient.
Knowing how a child is feeding doesn’t only alert me to a patient’s nutrition needs. It helps me identify other issues a child might be experiencing. Each question in the ICFQ paints a picture of the whole child’s needs.
Karen Crilly, PT, DPT, MAPT, CBIS, is an advanced clinical specialist at Texas Children’s Hospital who has dedicated her professional life to forming a strong background and expertise in the assessment and treatment of infants and children with chronic and complex developmental and/or neuro-motor impairment.
In his years as a neonatologist, Vincent C. Smith, MD, MPH, has found anecdotally and in his research that the clinician managing a family’s discharge from neonatal intensive care units (NICU) disproportionately impacts patient outcomes.
Smith, the division chief of newborn medicine at Boston Medical Center, led a study examining how families are prepared for discharge and found significant variability in outcomes. Families with a primary nurse invested in their transition home after NICU discharge fared better. “It wasn’t about gestational age, length of stay or medical complexity. That discharge clinician sets the course,” he says.
Smith wasn’t alone in his findings.
Clinicians across disciplines working with NICU families, as well as parents, find that whether families are ready for the dramatic adjustment of going from a team of clinical support to being on their own is usually left to chance.
Erika Goyer, parent liaison and communications director of National Perinatal Association (NPA), says, “Medical care is siloed. You have a high-risk pregnancy with one team. Once your baby is born and needs intensive care, they’re transferred to the NICU, and you move on to another team. As your baby progresses, you’re supposed to move on to a team at home. What that team comes down to at home is usually just you.”
An estimated 9-13% of newborns in the U.S. require neonatal intensive care for complex medical needs, a number that’s increasing.
To support these families, a cohort of multidisciplinary clinical leaders – including Feeding Matters – and parents came together to standardize NICU discharge. Their hope with the NICU guidelines is to improve families’ experience, reduce stress and help NICU babies access the follow-up care they need to thrive.
Why NICU families need more support
If you speak to NICU families after their first night home, says Smith, what’s true for all of them is that none slept comfortably. Even in the best circumstances, there tends to be a lack of continuity for families. “A lot of families feel abandoned by the NICU. They get their papers and their baby, and they’re joyous. Then they go from bells, whistles and lights, with 50 people around to just them and a baby. And they just had to make do.”
Kristy Love, executive director of NPA and NICU patient advocate, knows firsthand what it’s like to have a child in the NICU. Both of her children were NICU babies. She spent as long as three months in the hospital with one of her kids. What she’s found in her years supporting other parents is that not much has changed since she struggled to transition home with her preemie over 20 years ago. Parents still contact her as much as a year after leaving the NICU to share their struggles. “We have all this support in the NICU during our journey, and then once we go home we’re flying solo,” she says.
She shared her concerns with Smith at a board meeting for the National Perinatal Association, and from there, the NICU discharge guidelines were born.
NICU discharge guidelines explained
The National Perinatal Association spent a year looking at NICU discharge factors like research, protocols, insurance benefits and parents’ experience. The National Perinatal Association looked at NICU discharge factors like research, protocols, insurance benefits and parents’ experience. They worked together with a group of multidisciplinary experts, including Cuyler Romeo MOT, OTR/L, SCFES, IBCLC, director of strategic initiatives at Feeding Matters. Together the content experts finalized the NICU guidelines and submitted them to the Journal of Parentology for peer review.
The guidelines address topics like:
- Basic information
- Anticipatory guidance
- Family and home needs assessment
- Transfer and coordination of care
- Other important considerations
Smith says there are around 300 guidelines, and no one expects NICUs to adopt all of them at the same time. The hope is that hospital neonatal teams will identify a few of the guidelines particular to their organization and population and then build from there. Over time, they can gradually implement all of the guidelines.
“Many people get overwhelmed when they see the challenges before them because they don’t necessarily have the team, resources or funding. I find everybody can make small changes leading to bigger changes,” says Smith.
Having peer-reviewed guidelines is an important step to improve all families’ experiences. Organizations like the American Academy of Pediatrics and others recommend that hospitals have a transition plan, but it was never formalized until now. “Everybody said you needed to have a plan in place to execute, but they weren’t given any guidance on it,” says Goyer.
Pilot program to put NICU guidelines into practice
Having NICU discharge guidelines is an important first step. Putting it into practice in the field is essential. When the team who wrote the guidelines looked for a NICU as a pilot program for implementing them, they chose Banner-University Medical Center Tucson.
Romeo, who served on the guidelines committee, is a clinician there. Plus, a local community partner, Smooth Way Home, helps families transition home from the NICU.
In January 2022, Romeo says they launched the pilot program by identifying barriers to a smooth transition home. Through crowdsourcing in the unit and close collaboration with the developmental RNs, Nancy Gates and Ashley Lee, they chose three areas of focus:
- Processes: Discharge processes and coordination
- Providers: Community provider readiness to accept infants into community-based care
- Parents: Parent and caregiver education and advocacy to support optimal care and development at home
The team found that families may not receive developmental care support once they were discharged home. It was unclear if families referred to the Arizona Early Intervention Program (AzIEP) were receiving care. Not all children discharged from the NICU qualify for early intervention services despite their difficult beginnings. If they did qualify, getting that first appointment proved challenging. “Before piloting the guidelines, our NICU team would refer families to AzIEP and then have no way to know if they received care,” says Romeo.
A long standing barrier to accessing services after discharge was knowledge sharing. Nancy and Ashley reported that early intervention agencies often were unable to access the infants’ medical records. Without this information it was difficult for families to qualify for service.
To address these issues, says Romeo, the developmental RNs are leading the way in investigating process improvements for information transition while working closely with Smooth Way Home as a liaison for a warm handoff into the EI system.
It’s a multi-year pilot program that we hope will grow into a larger program if we are able to secure funding. Our families deserve to be well prepared so they can finally enjoy their baby at home.
Romeo says the guidelines lead to better outcomes, but funding remains the most significant barrier. “This work is done while the clinicians continue to fulfill their typical job demands. Nancy and Ashley do not have time allocated for this project, but they feel it is vital to the infant’s health and development so the work continues.” Everyone involved says improving the continuum of care for NICU babies and their families requires tremendous work. But every level of improvement matters to the families who benefit from it. As Goyer says, “This is all about making sure families aren’t alone and have the support and skills they need from the clinicians and community around them.”
Visit NICU to Home for more information about the NICU guidelines. Feeding Matters has been a strategic partner in creating and implementing the guidelines, together with NPA. For more information about how we help families of children with pediatric feeding disorder, click here.
How one mom overturned an insurance appeal to for an important treatmentEmily 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. 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.
6 tips for insurance appealsEmily 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. 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.
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 (cdc.gov)
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. https://doi.org/10.1177/0884533616669362
2. Turck, D. (2012). Safety Aspects in Preparation and Handling of Infant Food. Annals of Nutrition and Metabolism, 60(3), 211–214. https://doi.org/10.1159/000338215
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. https://doi.org/10.1177/0884533616669362
4. CDC. (2018, May 7). Infant Formula Preparation and Storage. Centers for Disease Control and Prevention. https://www.cdc.gov/nutrition/infantandtoddlernutrition/formula-feeding/infant-formula-preparation-and-storage.html 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.
After 8 years as an educator in the public school system, I have worked with a handful of students who have pediatric feeding disorder (PFD). The students I supported fell under broad spectrums of disability, and that does not exclude the spectrum that exists within PFD. Some children had g-tubes that required nursing accommodations and/or 1:1 aides; some had sensory sensitivities that made for a very limited selection of preferred foods; some children had to be spoon-fed with their food cut up and watched carefully for choking, gagging, etc.
It was a world that, for a long time, I generalized as “SpEd World.” It wasn’t until two years ago, when I learned about PFD through Feeding Matters, when I realized that PFD in many ways is a world of its own.
I wish I could say that PFD was something I was taught about in my college program; it was not. I wish I could say that I felt fully knowledgeable and prepared to support my students who had PFD; I was not.
On the very first day of school as a first-year teacher, I was face-to-face with a child who had PFD. There were times throughout the year, when I saw her sweet face become instantly distressed when she ran out of food in her lunchbox. It contained the only three things she ate: pureed fruit/vegetable blends (but only banana-apple-pear, sweet potato, and butternut squash… Other flavors, she would not eat and would know upon simply opening the puree pouch that it was not her safe foods), Nilla wafers, and vanilla-flavored milk.
Her parents packed what they knew to be a typical day’s worth of food for her, but on days when she was particularly hungry, she would eat through it by our scheduled 10:30 lunch, leaving nothing for 1:30 snack. She cried and screamed, and my heart just broke. I did everything I knew to do – offer her comfort, and offer her snack options from my cabinet. At the time, I did not know how specific and restrictive her diet was. Looking back, and knowing this student so well now, I realize that I caused even more distress in doing this. Her parents were amazingly accommodating, and we worked out a system to have extra supplies at school for her.
I tell this story not to discourage anyone, but to simply make the point that all teachers – even special education teachers, who have been trained in how to legally accommodate for a variety of unique needs – still need to be educated on pediatric feeding disorder. We know that roughly 1 in 37 children under the age of 5 in the United States are diagnosed with PFD; that means that there’s roughly one kindergartner in every classroom in America who has a diagnosis that we teachers know very little about and likely will not know how to accommodate.
The heart of a teacher is that of a giver, someone who wants to serve children and families and affect positive change in their community. In this way, we align beautifully to the heart and mission of Feeding Matters. We cannot, however, serve children and families without a growth mindset. We must always be seeking to learn new things, to improve our practice, and to gain a better understanding of the children we serve. PFD is one of the areas of knowledge that we teachers generally lack in, and this needs to be addressed.
I came to learn about PFD on my own terms, after gaining more and more students who fell into this category. I found Feeding Matters specifically when a student with a g-tube entered my classroom, because I felt I needed to know more in order to ensure his safety and wellbeing.
While it is amazing that Feeding Matters provides so much in-depth information, it is up to us to seek it out. I hope that we can integrate PFD into field programming at universities, not just for special education but for all educators across all specialties (because I know several students who are out in their grade-level classrooms with PFD as well!). Teachers should be prepared to serve these students, and this is the first step.
Below is a list of concepts that I feel should be included in educator academia:
- Definition, signs and symptoms of PFD
- Meaningful accommodations for PFD, (i.e., nursing services) and how these accommodations are written into IEPs/school documents
- Peer-reviewed research on how PFD affects development, including how their learning may be specifically impacted
While these are somewhat basic, this information is essential for teachers to effectively educate, advocate, and accommodate their students who have pediatric feeding disorder. With this as a solid foundation, we would be making a better world for children with PFD. And isn’t that the whole point?
Parents have provided permission for their student’s story and photo to be shared here.