Preparing your child’s tube-fed nutrition can take on the same loving approach you use for any family meal.
If someone in the family needed a low-fat diet, you’d stock up on low-fat foods. For optimal tube feeding, you need to have on hand the proper tools and the right ingredients. With the guidance of your healthcare team, you’ll know which items are necessary to nourish your child each day.
There is a wide range of tube-feeding formulas available for children. Formulas come in a variety of formats and packaging. Your healthcare professional will consider your child's medical diagnosis, unique nutritional requirements and the feeding schedule when recommending a formula.
- Blenderized with Real Food Ingredients
Tube-feeding formulas are specially formulated to provide all the nutrients needed to support a child's growth and development, in a form and amount that your child can tolerate.
Because a "complete feeding" of formula provides all the nutrition your child needs, tube feeding can replace feeding by mouth completely — even though your child may also be taking some food or liquid by mouth. Some tube-feeding formulas can also be taken orally too, commonly referred to as “oral nutrition supplements”.
Tube-feeding formulas are considered complete nutrition because they contain the protein, carbohydrate, fat, vitamins, minerals and water to help prevent nutrient deficiencies and support your child's growth, development, and special nutrition needs.
Most tube-feeding formulas will contain proteins, carbohydrates and fats. The type and amount of each of these important nutrients will vary in different formulas, so the healthcare team has many options to meet your child's needs.
A standard tube-feeding formula is a formula that is designed for children who have normal digestion, and will include all of the nutrients required for a growing child. Some standard formulas can be used for both tube-feeding and oral feeding, and some contain added ingredients such as fiber to promote regular bowel movements.
Like standard formulas, elemental formulas are nutritionally complete, which means they contain all the essential nutrients required for a growing child. Elemental formulas are different because they contain some nutrients, such as protein and fat, that are "broken down" into smaller components to make them easier to digest. (See the next section, Ingredients. Nutrients. Nutrition. for an explanation of these ingredients.)
Elemental formulas can be easier for the digestive system to absorb and metabolize, making them better suited for children with digestive problems, including malabsorption, short gut syndrome, inflammatory bowel disease, cystic fibrosis and other conditions that can cause problems with absorbing nutrition. Use under medical supervision.
Blenderized formula can also be made at home with real foods that are pureed in your blender. Another option is to use a commercial formula as a base for a blenderized diet. A variety of other foods, including fruits, vegetables, yogurt or cooked meats, can then be added to the mixture and blended. The "recipe" — or the various ingredients used — should be reviewed by a registered dietitian to make sure that the child's nutrient requirements will be met. Vitamin, mineral or protein supplements may be necessary to meet nutrient requirements.
Commercially prepared blenderized formula is made from real food ingredients such as chicken, vegetables and fruit, along with added vitamins, minerals and other nutrients. Commercially blenderized formulas may be suitable for children who have difficulty digesting a standard tube-feeding formula, or children who will be tube feeding for a long period of time.
A blenderized formula also has the advantage of providing ingredients from real food, which may help the child feel like they are participating in family mealtime because they are enjoying some of the same foods. Use under medical supervision.
Ingredients, Nutrients, and Nutrition
There are four main components of food, also known as macronutrients. They are:
Proteins help build and maintain tissues in the body. Muscle, organs, and the immune system are made up mostly of protein. The protein source in a formula can come from milk, soy or other types of food protein.
Common types of protein sources in tube-feeding formulas can include:
- Whey protein
- Soy protein
Whey and casein are the main forms of protein found in cow's milk and in breast milk, while soy protein comes from soybeans. Casein is a slowly digested protein and whey protein is a quickly digested protein. Whey protein empties from the stomach more quickly than either casein or soy, and may be helpful for a child who has reflux or vomiting.
Forms of protein: Protein can be provided in varying forms, including intact (whole protein), partially hydrolyzed (broken down or pre-digested), or as free amino acids (the smallest form of broken-down protein).
- Intact protein: This means that the protein has not been broken down at all. This is the type of protein that is used in most standard formulas and is appropriate for children who have normal digestion.
- Partially hydrolyzed protein: This means that the protein is broken down into smaller pieces called peptides, which are easier to digest than intact proteins. Formulas made with partially hydrolyzed protein are appropriate for those who have difficulty with digestion or absorption of a standard formula. Signs of these types of problems may be vomiting, diarrhea, bloating, excessive gas, fussiness or a bloated stomach. Formulas with partially hydrolyzed proteins can also be used in children with normal digestion if your healthcare professional feels the need.
- Free amino acids: Amino acids are the "building blocks" of proteins, and are the smallest forms of proteins that can be broken down into. Free amino acid formulas are used for children who have very severe digestive and absorption problems, cow’s milk protein allergy or have severe allergies to whole food proteins. If a child cannot tolerate a formula with partially broken-down protein (e.g., your child has severe diarrhea, vomiting, bloating, gas or pain), a free amino acid formula may be needed.
Carbohydrates are the main source of energy for the body. The body breaks down carbohydrates into simple sugars, which are absorbed from the digestive tract into the bloodstream. The hormone insulin then moves these simple sugars from the blood into the cells of the body, where they can be used as a source of energy. Tube-feeding formulas contain carbohydrates that are easily digested and absorbed in the digestive tract.
Some formulas include different types of fiber. Simple sugars such as sucrose and glucose can be used to flavor and improve the taste of a formula for a child who will be drinking it, but these ingredients can also increase the formula's osmolality, which is a measure of the number of soluble particles per kilogram of water. The osmolality of a tube-feeding formula is an important consideration because it can affect your child's ability to tolerate it. A formula with a higher osmolality compared to normal body fluids will draw water into the digestive tract, and extra water in the digestive tract can cause nausea, cramping, bloating, and diarrhea.
Fiber is added to some tube-feeding formulas to help maintain normal bowel function, to improve movement of foods through the digestive system, and to manage diarrhea or constipation.
Fiber can be either insoluble or soluble. Insoluble fiber may also be referred to as "non-fermentable" fiber. This type of fiber helps with digestion by providing bulk in the stool to help maintain healthy digestive tract function, including helping to manage diarrhea and constipation. Soluble fiber is also referred to as "fermentable" fiber. Certain levels of soluble fiber in the diet can help manage blood sugar levels, and lower LDL and total cholesterol.
Some soluble fiber is referred to as "prebiotic fiber," which helps to promote a healthy balance of beneficial microorganisms in the digestive system. Both types of fiber are not digested and absorbed by the body, but instead help to move food through the digestive system, promoting regular bowel movements and reducing the risk of constipation.
Fats are a major source of calories, and help the body to use certain vitamins. Corn and soybean oil are commonly used fat sources in tube-feeding formulas, and canola and safflower oils may also be used. The majority of fats in the diet are triglycerides. The triglycerides in tube-feeding formulas are either medium-chain triglycerides (MCT) or long-chain triglycerides (LCT). MCT can be more efficiently absorbed than LCT and are sometimes added to formulas for children with digestive problems. LCTs are essential to health, but are more difficult to digest. MCTs are more easily absorbed than LCTs, which is why they are sometimes added to formulas for children with digestive problems.
Fish oil is added to some tube-feeding formulas. This type of oil is a rich source of omega-3 fatty acids, particularly DHA and EPA, which help to support the immune system. Omega-3 fatty acids are known to have a role in reducing inflammation and supporting the health of the digestive system. Fish oil supplements have also been found to support the health of the respiratory system and heart.
Micronutrients include vitamins and minerals that play many important roles in our bodies, supporting growth and development and overall health. In the growing child who is being tube fed, it is important that they continue to get the recommended amounts of micronutrients. Nutritionally complete tube-feeding formulas provide all the recommended amounts of these nutrients.
It is important for hydration, and also forms the base for the tube-feeding formula. The amount of water affects the number of calories in the formula.
Most children who are being tube fed will require additional water to meet their daily fluid requirements and help support normal bowel function. Your healthcare team will advise you on the volume of water your child needs in addition to what they receive in their formula.
Which Tube-Feeding Formula is right for my child?
Pediatric tube-feeding formulas are designed specifically to meet the nutritional needs of children from age 1 to 13 years. Children age 13 years and younger should get a pediatric formula, because an adult formula may not contain the right amounts and proportions of vitamins, minerals, protein and other nutrients that a child needs for growth and development. Your healthcare professional will consider your child's unique requirements when recommending a formula, including:
- Calorie needs (also referred to as "energy needs")
- Mental condition
- Protein needs
- History of food intolerance or food allergy
- Gastrointestinal function
- Route of delivery — by mouth, tube or a combination of both
- Other special nutritional or digestive requirements
As children get older, it may be necessary to transition them to an adult formula. Talk to your healthcare professional to assess your child's specific needs.
The amount of calories contained in a certain amount of formula is often referred to as "caloric density." Standard caloric density is 1 calorie per milliliter (mL), or 30 calories per ounce of formula. A higher caloric density formula typically contains 1.5 calories per mL, or 45 calories per ounce of formula.
What are nutritional modulars?
Nutritional modulars— which are also called nutritional additives— are not complete formulas. They are used to supplement the tube-feeding formula with additional amounts of specific nutrients that your child may need in addition to what they are getting in their tube-feeding formula.
Nutritional modulars can provide extra protein, fat or calories. Nutritional modulars increase the amount of certain nutrients without greatly increasing the total volume of formula being delivered in the feed. For example, adding a small amount (1 tablespoon) of a fat modular can add an additional 115 calories in a very small volume. This can help a child gain weight without giving extra formula. Nutritional modulars are added to a regular tube-feed following the technique specified for either an open system or closed system of delivery.
Hypoallergenic vs. non-hypoallergenic formula
There are tube-feeding formulas available that are classified as hypoallergenic, and these are appropriate for children with a severe food protein allergy. Children who are not tolerating a standard formula well, but have not been diagnosed with an allergy, should try formulas containing proteins that are partially hydrolyzed ("broken down"). For children who are diagnosed with food protein allergy, hypoallergenic fromulas that are made from extensively hydrolyzed protein or formulas containing amino acids (the smallest broken-down form of proteins), may be appropriate. It is important that protein allergy is accurately diagnosed by a specialist or by your doctor so that the formula recommendation best fits your child's nutritional needs.
Does taste matter?
When your child is taking formula by mouth, taste can be an important factor in his/her acceptance of the formula. Even when the formula is used for tube feeding, some parents say that their child does taste the tube-feeding formula, as an aftertaste or the result of regurgitation or burping, and may want a flavored formula. For the child who is drinking some formula by mouth as well as being tube fed, there may be an advantage in using a formula that can be used for both oral and tube-feeding so they don't have to use two different formulas.
Storing tube-feeding formula
It is important to store formula properly. Formula is like food and can make your child sick if it is not handled or stored properly. Be sure to follow the instructions on label, but generally:
- Store unopened formula in a clean, dry place at room temperature
- If only part of a can or container of formula is used, cover it with plastic wrap, label it with the date and time it was opened, and put it in the refrigerator
- Use it within 24 hours of opening it (If not used in 24 hours, throw it out).
- To avoid an upset stomach, take formula out of the refrigerator 30 minutes before using and leave covered with plastic wrap
- Do not heat formula in a microwave or on a stovetop
Tube-Feeding Success Stories From Real Parents Like You!
It's often difficult to imagine what life looks like once you settle into caring for a tube-fed child at home. Here are encouraging words from parents about their children and experiences with tube-feeding:
"When we first found out that our son needed to be tube-fed, we were mostly just scared and wondering if he would still be able to eat by mouth. If he would ever be [able to] transition off the tube. Would we ever be able to leave the house? … At first, we were not at all comfortable with administering our son's tube-feedings. We only had two days of watching at the hospital, and we didn't have anything to practice with. We had no idea what we were doing. But now, I am able to train my extended circle of care … The support we've received from other parents and organizations has been so helpful. I joined all kinds of forums to get as many ideas as I could. Sometimes you are just interested in support; sometimes you are really looking for information."
— Jacquelyn F., mom of Rafael, age 6
"Tube-feeding has been a huge learning experience! I constantly think about the nutritional aspect of my daughter's diet, and wonder if she's getting enough or not. Our pediatric nutritionist has been one of my greatest resources … There are a lot of questions when your child is being tube-fed. I am in regular contact with her feeding 'team,' and I don't hesitate to pick up the phone and call when I have a question."
— Cathy R., mom of Breeauna, age 6
"When we first found out that our daughter would be tube-fed, my first thought was dread, horror, fear and anger all rolled into one. I knew our life would never be the same … I think about my child's nutrition constantly. It's a daily fear that I won't get enough in her or whether she is on the best formula for her needs … In the process of learning how to manage our daughter's tube-feeding, our healthcare team has been beyond helpful. These ladies have answered questions I had about the tube itself, suggestions for feeding routines, problem solving for vomiting, tube blockages, etc. And it is just a stress relief as well … Our healthcare team has been very helpful, but I have really found that experience is the best teacher — it's the only way to learn! I did like being talked through it, but the only way I finally understood was just do it over and over and over."
— Joanne C., mom of Evelyn, age 5