Most often, the feeding tube is placed related to a dysfunction in the eating process that inhibits the child from being able or willing to consume adequate nutrition by mouth. Lack of adequate nutrition can lead to malnutrition and developmental delay over time. The feeding tube provides the child with an opportunity to meet nutrition needs to promote overall health, growth and development. Studies that have focused on the benefits of tube feeding, specifically gastrostomy feeding, report improved health and weight gain in children and decreased caregiver stress. Caregivers reported spending less time focused on feeding and administering medications and decreased concern regarding adequate nutrition intake.
Feeding a child, whether orally or via feeding tube, is a complex issue that requires a multidisciplinary team approach. Often, children on feeding tubes will have a care team that includes, at minimum, the following practitioners: gastroenterologist, nurse, registered dietitian, speech language pathologist, psychologist and social work. The team works together to ensure all of the child and caregiver’s needs are met to support successful feeding outcomes.
Opting for a feeding tube is not synonymous with giving up on oral feeding. In fact, the feeding tube provides a mechanism for nutrition intake while the child is working on advancing oral feeding skills. The focus can shift away from anxiety surrounding calorie intake and growth to promoting adequate practice and repetition with oral feeding when a feeding tube is in place.
Selecting the Type of Feeding Tube
The selection of the feeding tube type is typically based on how long it is anticipated that the feeding tube will be needed. Short-term feeding tube use is considered around 4 to 6 weeks, but can be up to 12 weeks, and long term access is any length of time beyond 12 weeks.
Short-Term Access Feeding Tubes: Orogastric Tube: “OG” tubes are most often used for pre-term infants less than 34 weeks of age before the gag reflex is developed. The tube can be placed at bedside and goes through the mouth into the stomach.
Nasogastric Tube: “NG” tubes are placed in the nose and extend down to the stomach. NG tubes are the most common short-term access feeding tube.
Long-Term Access Feeding Tubes: Gastrostomy tubes are tubes that are surgically placed into the stomach to provide nutrition, fluid and medications. Gastrostomy tubes are typically referred to as “G-tubes”.
Percutaneous endoscopic gastrostomy: “PEG” tubes are a common type of gastrostomy tube that is used for the first 8-12 weeks, post-surgery. The tube is held in place by a balloon or bumper and has a longer flexible tube that can be used for administration of medication, nutrition and fluids.
Low Profile Tubes/Buttons: There are several brands of low-profile tubes/buttons, and some are attached with balloons, and some are not. Many families and children prefer low-profile tubes/buttons because they are easily hidden under clothes and do not have a flexible tube attached. These tubes come with an extension set that can be attached for administering medication, nutrition and fluid.
Feeding tubes are typically placed in order to provide nutrition, medication and fluid directly into the stomach as is the most normal to the physiological process. However, there are instances in which a child may require the tube to extend further down into the gastrointestinal (GI) tract such as into the jejunum (a portion of the small intestine). The decision to extend the tube into the small intestine would be a conversation between caregivers and the gastroenterologist. A few examples of when a tube may need to be extended into the small intestine include aspiration concerns, severe reflux, or recurrent emesis.
Choosing a product to feed through a feeding tube can feel complicated. There are several factors that need to be considered before choosing what to provide for nutrition via tube, including the child’s age, allergies or intolerances and, at times, what insurance will cover.
Infants
The age range for infants is less than or equal to 12 months. During this time period, the American Academy of Pediatrics (AAP) recommends breast milk or infant formula should be used to provide adequate nutrition and hydration.
If breast milk is unavailable, there are several types of infant formulas that can be provided through the feeding tube. Infant formula comes in three forms: powder, concentrate or ready to feed.
- Cow’s Milk-Based Formula: Cow’s milk-based formula is considered the “standard” infant formula. Examples include: Enfamil Infant, Similac Advance, Gerber Good Start.
- Soy-Based Formula: The primary indication for soy formula is a diagnosis of galactosemia or congenital lactase deficiency. Soy formulas have not been found to be beneficial for colic or cow’s milk protein intolerance. Examples include: Enfamil ProSobee, Similac Soy Isomil, Gerber Good Start Soy, Parent’s Choice Soy (Walmart), Earth’s Best Organic (Soy)
- Hypoallergenic Formula: This formula is designed for infants who are unable to tolerate the intact protein of cow’s milk or soy-based infant formula. The protein in the formula has been partially or fully broken down for better tolerance and absorption.
- Partially Hydrolyzed: Similac Pro-Total Comfort, Gerber Good Start Soothe, Enfamil Gentlease
- Extensively Hydrolyzed: Alimentum, Nutramigen, Alfamino. Extensively hydrolyzed formula (or fully broken-down protein) is appropriate for cow’s milk protein allergy.
- Amino Acid Formula: Unlike hypoallergenic formula, amino acid formula contains protein that has been completely broken down into the simplest form (amino acids). Amino acid formula is used for children with cow’s milk protein allergy who do not respond to extensively hydrolyzed formula. Examples include: Neocate, Elecare and Nutramigen.
Caregivers may wonder how to choose between formula brands, however, the formula industry is highly regulated by the FDA to ensure all formulas are meeting infant nutrient needs. The brand choice may come down to what is covered by WIC or insurance, but caregivers can be assured that any brand will meet nutrient needs. Additionally, specialty formulas are also available for pre-term infants as well as for infants with various medical conditions, including metabolic disorders, gastrointestinal disorders and renal disorders.
The type and volume of breast milk or formula that is provided to the infant is coordinated by the registered dietitian (RD) and gastroenterologist. The dietitian’s role is to assess growth and calculate the nutrient needs required to support adequate growth and development and, in conjunction with the gastroenterologist or other specialty team members, choose a formula to meet the infant’s nutrition needs, including vitamins and minerals.
Children Ages 1-13
Once a child reaches a year of age, nutrient needs change and the child is ready to advance beyond infant formula. By the time a child is a year of age, there are a variety of formulas to choose from, as well as pre-made real food blend options or home blends
- Milk and Soy Protein-Based Formulas: Many “standard” formulas are made from a combination of milk and soy-based proteins. Examples include: Pediasure or Boost Kid’s Essentials. These options come in ready-to-feed form, and a variety of flavors that can be accepted by mouth. The formulas also can have added fiber.
- Tube feeding “tolerance” is a common concern among both caregivers and providers. Tolerance of tube feeding essentially means that a child is able to digest and grow on an appropriate volume of tube feeding for their age and size without any adverse side effects, such as vomiting, retching, reflux or bowel movement concerns. At times, a formula change can help with tube feeding intolerance.
- Pea Protein-Based Formulas: If a child struggles to tolerate milk or soy-based formulas, Kate Farms produces formula made from pea protein and free of whey, lactose, casein, soy, gluten, nuts or corn.
- Hypoallergenic Formulas: Peptide (partially broken-down protein) formulas can help with tolerance concerns. Examples include: Pediasure Peptide, Peptamen Jr., or Kate Farms Pediatric Peptide.
- Amino Acid Based Formula: Just like in infants, amino acid formula is often used for severe allergies or intolerances. Examples include: Elecare Jr., Alfamino Jr. or Neocate Jr.
BEYOND FORMULAS
Whole food blend options have been a focus in nutrition research within the past several years. Multiple studies have pointed to the benefit of whole food blended diets and improved feeding tube tolerance. Specifically, one study focused on providing a pureed by G-tube diet in children post fundoplication to reduce gagging and retching.3 The exact mechanism of why the puree by G-tube diet (PBGT) helps to reduce retching and gagging is unknown, but it is suspected that the thicker blend (higher viscosity) allows for slower emptying of the stomach. There are several commercial options on the market for blended whole food formulas. Some blends provide a thicker viscosity which is helpful for retching and gagging, while others are thinner. The literature points to moderately thick and extremely blends being important for improving the retching, reflux and gagging symptoms, but whole food blends in general have been shown to help with overall GI tolerance. Below are the commercially available whole food blended options.
Compleat Pediatric (Nestle)
The product is free of gluten, corn, and lactose. The protein source is chicken, milk protein and pea protein. The blend is considered thin.4 The recommended delivery method is through an 8 French or larger feeding tube via gravity feed or pump.
Pediasure Harvest (Abbott)
The product is free of dairy and the protein source is soy. The blend is considered slightly thick.4 The recommended delivery method is via syringe bolus feeding or gravity feeding. The blend can be fed via pump in a continuous feed (including overnight
Nourish (Functional Formularies)
The product is free of dairy, tree nuts, gluten, soy and corn. The protein source is brown rice protein, quinoa, garbanzo beans and green pea. The blend is considered mildly thick.4 Nourish can be used with tubes that are a 6 French or larger. It can be delivered at room temperature through a pump or gravity bag and the hang time is 12 hours. Infinity brand pumps may be more suitable for delivery in comparison to Joey pumps.
Kitchen Blends (Medline)
The product line as 3 different “meal” options and meals are free of dairy, gluten and soy. The blend is considered mildly thick5 and can be administered via syringe, gravity or pump.
Compleat Organic Blends (Nestle)
The product has two options: chicken garden blend or plant-based. Both products do not contain dairy, soy or corn. The chicken garden blend protein source is chicken and pea protein. The plant-based blend protein source is pea protein and rice protein. The blends are considered moderately thick.4 The blend can be delivered via syringe bolus or pump-assisted (Enteralite Infinity Pump System) feeding with a 12 French feeding tube or larger. The hang time is 8 hours. Gravity feeding is not recommended related to the viscosity of the formula.
Real Food Blends (Nutricia)
The product line has 6 different “meal” options and are meant to be rotated to ensure adequate variety. The individual “meals” are not nutritionally complete and it is important to work with a Registered Dietitian to ensure all micronutrient needs are being met when the product is used as sole source nutrition. The products are free of gluten, dairy and nuts. The blends are considered extremely thick4 and are meant to be bolus fed using a 60 mL syringe and a 14 French feeding tube or larger.
Caregivers may choose to blend food themselves to provide via G-tube. Caregivers can work with a registered dietitian to come up with a blended recipe that meets all of the child’s nutrient needs to ensure adequate growth and development. For whole food home blends, it is recommended that the child has a 14-16 French tube and that the blend is administered as a syringe bolus feeding through a straight bolus extension kit. The blend can be given using a 60 mL O-ring syringe over 10-15 minutes, or longer if needed. Feeding Tube Awareness Foundation provides excellent videos on their website demonstrating administration of a home blend via G-tube.
A high-powered blender (Vitamix or Blendtec) will provide the best product when blending at home in order to ensure the blend is smooth and will not clog the tube. Home blends can range from mildly thick to extremely thick. There are several factors that can attribute to the thickness of the blend including amount of liquid included in the recipe as well as added later during feeding as well as the freeze/thaw cycle.4 Defrosting a large batch of home blend can reduce the thickness. In order to maintain the viscosity of the blend, it is recommended to give water 1-2 hours post feeding to avoid dilution of the blend.
Nutrition feeding schedule
Once a feeding tube type and a formula or whole food blend is selected, establishing the feeding schedule is an important final component of completing the enteral nutrition plan. There are several options for creating the tube feeding schedule, and caregivers, registered dietitians and GI doctors can work together to determine the best plan for the child.
Bolus Feeds
A bolus feed is defined as giving a set volume to the child within the time it would take for a child to eat a meal (about 20-30 minutes). Typically, bolus feeds are given via syringe, but some families opt to provide the feed via pump over 30 minutes. Bolus feeds provide the most natural physiological experience for enteral feeding as the feeds are set up like standard meals and snacks and are provided during the day at natural meal times, typically 2-3 hours apart.
Continuous Feeds
There are situations in which a child requires continuous feeding throughout the day and night including volume tolerance issues, concern for aspiration or j-tube feeding. Continuous feeds provide a small volume of feeding over multiple hours throughout the day. Children who require continuous feeds may need to use a backpack with a portable pump as they will be receiving feeds for the majority of the day and night. Continuous feeds are less natural as children don’t typically receive nutrients slowly throughout the day and throughout the night.
Combination of Bolus and Continuous Feeds
Some children will have a schedule that combines bolus feeding during the day and continuous feeding overnight. This schedule may be a solution for children who can tolerate only a certain volume of a bolus feeding, but need the continuous feeding overnight to meet the remaining calorie needs. Additionally, children will sometimes eat what they can during the day and receive overnight tube feeding to make up the additional calories they are unable to consume during the day.
Example Schedule (1,000 mL/day)
Including Oral Feeding in the Tube Feeding Schedule
When possible for the child and caregivers, it is helpful to have a bolus feeding schedule or at least a combination of a bolus feeding schedule with an overnight feeding schedule when working on oral feeding. As mentioned previously, a bolus feeding schedule provides the most natural and physiological feeding schedule. It can help children establish a regular “eating” routine and promote the ability to establish hunger cues. It may be difficult for a child to feel hunger or show interest in eating if they are being fed all throughout the day and overnight. Working with a registered dietitian to establish a feeding schedule that is conducive to oral intake can make a big difference in acceptance and interest in feeding by mouth. Optimizing the feeding schedule to provide opportunity for oral intake can help to set the child up for success when working on oral feeding. Additionally, the registered dietitian can help caregivers navigate how to wean tube feeding based on the volume consumed by mouth in order to give the child “credit” for the volume that they were able to consume. Adjusting tube feeding based on oral intake can help to avoid overfeeding the child and ensure an appropriate physical experience after eating.
Navigating the world of tube feeding can feel complicated, but there are many excellent resources to help including Feeding Tube Awareness Foundation and Oley Foundation. At the end of the day, when a child is able to receive adequate nutrition, whether it is by mouth or by tube, they are set up for a successful future of growth and development.
ABOUT THE AUTHOR:
Caitlin Waddle, MS, RDN, LD is a pediatric registered dietitian in the Atlanta, GA area. Caitlin’s primary areas of interest and clinical work include nutrition in children born prematurely, children with allergies, avoidant/restrictive food intake disorder and weaning children from tube feeding.
References
- Craig GM. Psychosocial aspects of feeding children with neurodisability. European Journal of Clinical Nutrition. 2013; 67: S17-S20
- Avitsland TL, Birketvedt K, Bjornland K, Emblem R. Parent reported effects of gastrostomy tube placement. Nutrition in Clinical Practice. 2013; 48 (4): 493-498.
- Pentiuk S, O’Flaherty T, Santoro K, Willging P, Kaul A. Puree by gastrostomy tube diet improves gagging and retching in children with fundoplication. Journal of Parenteral and Enteral Nutrition. 2011; 35 (3): 375-379.
- Hron B, Rosen R. Viscosity of commercial food-based formulas and home prepared blenderized feeds. JPGN. 2020; 70(6): 124-128.
- Weston S, Clarke T. Determining viscosity of blenderized formula: a novel approach using the international dysphagia diet standardization initiative framework. JPEN. 2020; 44:1140-1143.
A Measured Approach to Feeding
BY Robin Cook, MS, RD, CSP, LDN
All parents want their children to eat a healthy, balanced diet to nourish their growing bodies and meet their developmental needs. But for families who have children who can’t eat by mouth, it can be a daily struggle to ensure their medically-fragile children receive proper nutrition. Until recently, these families were limited to two feeding options:
- Commercially available formulas that were nutritionally balanced, but limited in ingredient selection
- Real-food, home-based formulas that were time consuming to create and difficult to ensure contained nutritional adequacy
In March 2020, Children’s Hospital of Philadelphia (CHOP) and Nestlé Health Science launched a Blenderized Tube Feeding Recipe Builder web tool that provides an innovative approach to offering whole food-based and nutritionally complete recipes for tube-fed children aged 1 to 13.
The unique, online tool makes it easier for families to give their feeding-tube-dependent children real food, under the guidance of a healthcare provider. The project is the culmination of more than eight years of research and fine-tuning at CHOP, partnerships with CHOP’s Department of Clinical Nutrition, Office of Entrepreneurship and Innovation, and Technology Transfer, as well as insight from patient families, students at Temple University’s Fox School of Business and Nestlé Health Science.
The Evolution of Tube Feeding
Some children — for a variety of reasons such as gastrointestinal disease, congenital gastrointestinal anomalies, genetic conditions or an inability to swallow — need to receive their nutrition from a feeding tube. Parents of children who may require enteral (direct to the GI tract) nutrition for a long time often opt for a gastrostomy tube, or G-tube, placed directly into their stomach.
Decades ago, it was not unusual for table food to be blended and given to patients though their G-tube. But, as commercially-prepared formulas were introduced that were nutritionally complete, sterile and easily delivered, feeding shifted to giving these formulas to tube-fed children of all ages.
About eight years ago, parents at CHOP began expressing interest in moving away from commercially available formulas, and instead giving real food to their tube-fed children in the same way they would for all members of the family.
The challenge was how to make sure children received the correct number of calories and the correct mix of macro- and micronutrients to promote optimal growth and development. So began the creation of a spreadsheet that would act as a road map for families who wanted to give their tube-fed children a homemade, blenderized diet that met their specific nutritional needs, as well for healthcare providers who could support this practice.
While the spreadsheet served the purpose to create nutritionally complete recipes, it was still cumbersome for some families and was limited to clinicians at CHOP. We thought some of the manual steps would be much easier in the form of a web-based application that could be available on a larger scale outside the CHOP community. The idea was brought to our Office of Innovation and Entrepreneurship (OEI) and a chance encounter with patient family led us to our first partnership – with a group of students at Temple University’s Fox School of Business.
Exploring options to transform concept into reality
During our initial meeting with the students, OEI and I explained the basics of feeding tubes, enteral nutrition, blenderized tube feeding and CHOP’s new-product incubation program and process. The students, completely unfamiliar with medical nutrition therapy, used their technologic skills to bring the idea of a web-based platform to life. After creating digital wire frames, the students turned over their concepts to CHOP’s OEI to continue to advance the project.
The wire frames were used to obtain feedback from both CHOP dietitians and families who were using or considering using a blenderized diet for their child. The response was overwhelmingly positive and we began looking for a commercial partner with the resources to build the application and market it widely.
Nestlé Health Science, a major organization in enteral feeding and a company who understands and supports parents who want to incorporate more real, recognizable food into their child’s diet – regardless of how they eat – was our first point of contact. After months of collaboration, the Blenderized Tube Feeding Recipe Builder was launched.
The Recipe Builder helps eliminate some of the trial and error that families experienced when the spreadsheet was their only resource. It helps families optimize nutrition and calories for children who may be only able to tolerate limited volumes per feed. Though still time-intensive for families, the website streamlines the decision-making and calculating, while preserving the intent to provide individualized food blends. And, families – no matter where they live or if they are CHOP patients (add space) – can choose and give a blenderized diet to their child under the guidance of a healthcare professional
The Recipe Builder can be customized to each child’s unique needs, including calories, volume limitations and allergies. It contains numerous features, including the ability to save recipes and meal plans for up to seven days, print or email shopping lists, and create a summary document containing the child’s last recipe (complete with nutritional information), which can then be sent to the child’s healthcare team. The tool is available at www.compleat.com/recipes.
ABOUT THE AUTHOR:
Robin Cook, MS, RD, CSP, LDN, is a registered dietitian in the Department of Clinical Nutrition and Division of Pediatric General, Thoracic and Fetal Surgery at Children’s Hospital of Philadelphia.
Read the article here.