Deciding to tube-feed your child may be an overwhelming, agonizing decision. Sometimes the choice may be out of your hands, such as when your child has trouble eating enough to grow and thrive, or when swallowing isn’t safe due to a condition. Other times, feeding can take hours and can be stressful for both you and your child, but you’re not sure if it’s medically necessary. Let’s take a look at tube-feeding in more detail to help you navigate this decision.
Reasons a feeding tube may be needed
Sometimes your child may be refusing food, making feeding very difficult and time-consuming. One of the below underlying issues may be the problem. It’s important to speak with your doctor if you are having any trouble feeding your child.
Common reasons for tube-feeding:
- Your child has trouble coordinating swallowing, sucking, or breathing, preventing proper caloric intake.
- Your child is aspirating (food or liquids are entering the lungs), making it dangerous to eat orally.
- Your child has gastrointestinal or other conditions that make tube-feeding the safest option.
- Your child does not tolerate oral medications, leaving a feeding tube the best option for delivery.
You may be referred to a gastroenterologist, pulmonologist, and swallow specialist to investigate underlying causes. This team of doctors will help you evaluate whether a feeding tube is the best path for your family. “Talking to your child’s doctor can help you make an informed decision,” says Ruba Abdelhadi, MD, professor of pediatrics at the University of Missouri-Kansas City School of Medicine. “If they cannot safely receive the feeds and hydration by mouth in amounts that are sufficient to meet their growth needs and hydration needs respectively, then the next step is discussing placing a feeding tube,” Abdelhadi adds.
Placing a feeding tube can help both the child and the family, eliminating the desperation at mealtimes. “If, in the end, that child is not gaining sufficient weight or meeting their caloric goals, then a G-tube is very helpful not just to the child, but to the family. It gives the parents a lot of relief on so many different levels,” says Jennifer Mait-Kaufman, MD, a pediatric gastroenterologist at Cohen’s Medical Center in New York. “It helps parents who spend their life trying to feed their children,” she adds.
Some children may be able to continue oral feeding, utilizing the feeding tube to add calories, nutrition and/or medicine. And, it can be removed later. “A G-tube does not necessarily have to be thought of as permanent,” says Mait-Kaufman. “If the child develops skills that enable them to eat better or they improve from a medical standpoint, a G-tube can always be removed.”
Types of tube feeding
There are two methods of “enteral” (by stomach or small bowel) tube-feeding. One places the tube directly into the stomach, and the other places the tube through the nose, eventually reaching the stomach. For reference, there is also “parenteral” nutrition, which delivers food directly into a vein, such as through an IV in a hospital.
Types of tubes used for enteral feeding:
- An NG tube (nasogastric tube) is a thin tube inserted through your child’s nose. It goes down the throat and into the stomach. It is usually not a long-term solution. It is not very comfortable for the child, and children can pull it out. Since it doesn’t require surgery and can be placed rather quickly, it may be used in emergencies, or if a child is unable to undergo surgery.
- A G-tube (gastrostomy tube) is the most common long-term solution. It is placed surgically, under anesthesia, directly into your child’s stomach through an incision made in the skin, called the “stoma.” Inside the body, there is either a mushroom-shaped bumper or a balloon attached near the end of the tube, inside the stomach, to hold it in place. If your child has a tube with a balloon, the balloon is filled with water after insertion, to prevent the tube from popping out. On the other end of the tube, outside the body, there is either a tube or a “button,” which covers the G-tube external “port.” You attach a feeding tube (attached to a feeding bag) to the gastrostomy tube, or you open the button and insert the feeding tube, to deliver nutrition directly into the stomach. A feeding tube pump powers the process.
- A J-tube (jejunostomy tube) is also placed surgically through an incision in the abdomen. It is placed lower than the G-tube is placed so that the tube enters the small intestine, known as the jejunum. Since nutrition skips the stomach and its digestive properties, a J-tube tends to be smaller than the G-tube, allowing only thin liquids to pass through.
- A PEG tube (percutaneous endoscopic gastrostomy tube) is a type of G-tube placed using an endoscope, also requiring anesthesia. A local anesthesia may also be given. PEGs usually have internal and external “bumpers,” instead of a button and balloon.
What to expect during recovery
Placement of an NG-tube can be uncomfortable, but very little recovery time is required. For G/J/PEG-tube placement, your child will stay in the hospital for two to five days. During this time, your child’s medical team can monitor how your child tolerates the tube and the feeds. Nurses will teach you how to use the G-tube, the pump, the parts, and the extension tubes. A nutritionist will also likely visit to discuss caloric goals and next steps, as you transition your child into tube-feeding.
Michelle Medić’s daughter, Mila, has a laryngeal cleft (a congenital abnormality that allows food to pass through the larynx into the lungs) and laryngomalacia (a softening of the voice box tissues). The two together cause feeding issues, silent aspiration, and trouble speaking. Mila struggled to feed from birth. When she was 2 months old, her doctors determined that she was failing to thrive.
At 5 months, Mila began NG tube feeding, but it wasn’t easy. “She liked to grab things,” says Michelle, 37, from Whitestone, New York. “She would pull that tube out 900 times a day. Her face would be raw from tape changes. It took both me and my husband, Denis, to do tube and tape changes. We’d swaddle her tight. She’d wriggle, scream and cry. Doing it on an alligator would have been easier.”
A month later, they switched to a G-tube. “I was afraid of everything—complications, pain, how would she react to it?” Michelle says. She worried whether they were making the right choice. Connecting with other G-tube parents helped. “I think 99% of parents will tell you they wish they went to a G-tube from an NG quicker,” Michelle says. “It was a total game changer,” she adds.
There are 4 ways to deliver feeds
- Pump feeding uses a feeding tube pump machine. It controls the rate the nutrition (formula or blended food) leaves the feeding bag, enters the long tube attached to the bag, and ultimately enters the stomach. You can adjust the pump to set the rate and amount of nutrition to control how much is fed each hour.
- Continuous feeding is a type of pump feeding, where you set a long window of feed time, such as overnight. This allows steady nutrition and may be required for children who cannot tolerate faster rates.
- Push feeding (also called intermittent bolus feeding) is manual. You pour the nutrition into a large syringe and then use the syringe plunger to push the food into the extension tube, connected to the button. The plunger allows you to control the rate of flow.
- Gravity feeding is set up similarly to push feeding. Instead of using the plunger, you allow gravity to do its job. You can adjust the flow by raising or lowering the syringe.
See our videos from Children’s Hospital Colorado to learn how to give NG and G-tube feeds:
Formulas for tube-feeding your child
Parents can opt to buy pediatric tube-feeding formula or blend recipes at home. There are a vast number of formulas available for purchase, which come in different dietary varieties and caloric densities. Insurance or state funding (such as Medicaid) covers most options. Your doctor or nutritionist will work with you to find the right one for your child.
- Standard formulas are for kids who can digest nutrients without difficulty.
- Elemental formulas are for kids with a compromised digestive system.
- Specialized formulas are for kids who have allergies or have medical conditions, such as epilepsy requiring a ketogenic diet, diabetes requiring low sugar, or other conditions requiring dietary control such as kidney disease.
Nestle has a wide range of formulas, many of which are recommended in hospitals. Kate Farms and Functional Formularies are also popular, offering ranges to include organic and non-GMO plant-based formulas in elemental peptide versions. Functional Formularies also offers a dairy-free keto formula.
Some parents make their own formula at home. You can work with your child’s dietician to develop a formula that meets your child’s needs. For children with few restrictions, some parents opt to blend standard meals. Irene Marsh Millard Meleshko, from Alberta, Canada, does this with her 18-year-old daughter Angela. Angela has Pura syndrome, a neurodevelopmental disorder resulting in a myriad of symptoms including developmental delays, seizures, and other issues. “I blend meals up with enough liquid to make it thin, and then I push it with a syringe directly into her PEG tube,” she says. “It’s so much easier than dealing with the feeding bags and the extensions and all that stuff. There are lots of things that you can put in the puree—granola, dark chocolate, avocado, chia seeds, shredded coconut, banana chips or raisins, and olive oil. Those are all things that can pack in extra calories with not much volume.”
Side effects and things to look out for
G-tube feeding can have both normal and abnormal side effects, such as:
- Gas and bloating: This can be painful, but it can be relieved by “venting the tube.” Venting is a procedure that involves attaching an empty syringe to the port, without the plunger, allowing air to escape from the stomach through the tube.
- Pain and cramping: It’s important to find the right rate of flow for your child. Going too fast, for example, can result in cramping. “If the feed goes in too fast, it is painful. It makes your stomach cramp,” says Danielle Stevens-Fasnacht, 38, who has four children using G-tubes—and also has one herself. “And you kind of feel like that, you know, horrible crampy feeling when you’ve eaten the food wrong. It also definitely happens if something is too hot or too cold; you definitely feel that,” she says.
- Skin irritation: This commonly occurs around the tube site and can be treated with topical medication. Some parents use a jelly cream to avoid irritation, such as Pipette’s balm or Vaseline. To help heal irritation, some parents turn to zinc oxide, such as by applying diaper creams, like Weleda’s, to the skin.
- Leaking: Small amounts of fluid around the stoma are normal. It is usually made up of stomach contents, water, and/or formula. It is caused by the movement of the tube and button. Large amounts should be reported to your doctor. Too much leakage can cause skin irritation or infection, as well as a breakdown or enlargement of the stoma.
Granulation: Granulation tissue is a combination of new connective tissue and tiny blood vessels that can grow at the site. It is the body’s way of healing and is normal. Most doctors recommend applying medicated Granulotion, which can dry it up, resulting in the granulation falling off. If it becomes severe, or if there is bleeding, your doctor or nurse can remove it by a process called cauterization. The doctor uses a chemical, usually silver nitrate, to burn off, or “cauterize,” the granulation. There aren’t any nerves in granulation tissue, so it is not painful.
- Vomiting: Always speak with your doctor if your child is experiencing vomiting. Vomiting is usually helped by changing the formula, decreasing the amount of food per serving, increasing the number of feeds per day, or decreasing the flow rate. Sometimes it can go hand-in-hand with acid reflux.
- Pneumonia: Though rare, some studies have reported the risk of fluids entering the lungs, via coming up from the stomach. Always consult your doctor if your child has a fever, seems overly tired, or displays other flu-like symptoms.
- Infection or abscess at the site: While also rare, an infection or abscess could require a visit to the emergency room and possibly surgery. If you suspect an infection or abscess, consult your doctor immediately.
- The tube can come out: If the tube falls out or is pulled out, it needs to be replaced immediately. This usually happens due to a rupture in the balloon holding it in place, for those tubes with balloons. The stoma can close up pretty quickly, especially in the first few months.
G-Tube Replacement and Removal
For balloon-type tubes like the Mic-key G-tube, parents can be trained to replace the tube at home. Whether the tube comes out unexpectedly, or it’s time for replacement, it is generally recommended to see a doctor for the first replacement. In most cases, G-tubes require replacement every 3-6 months.
If your child no longer needs to feed via a G-tube, it can be permanently removed. It is best to see your doctor to plan for removal. For example, if it has been in place for less than a year, the tube can be removed in your doctor’s office. The site will usually close spontaneously. If the G-tube has been in place for a longer period, then it usually requires an outpatient surgery to remove the tube and then close the site with internal and external stitches.
Make the decision that’s right for your family
Danielle Stevens-Fasnacht has empathy for parents encountering the unexpectedness of having to tube-feed a child, “You don’t expect your kid not to be able to nourish their own body. Kids are supposed to eat,” she says. With four kids who have had G-tubes, she says, “the G-tube doesn’t make life easier, it makes life possible.” In regards to managing her kids, she says, “I have a unique advantage understanding them because I have a G-tube myself,” but she admits it can have its challenges. “It can be hard making sure that you have the right supplies and the right formula and you’re doing it the right way,” she says.
Mila’s mom, Michelle Medić, recommends, “Take your time and weigh not just the pros and cons, but your personal pros and cons. Every child is different, so a con to you, might not be one to me. You may feel torn, and you may feel like every choice you make could be the wrong one, but you know in your heart what the right decision is. Trust in that always.” In the end, “know that you, and you alone, are your child’s advocate,” she adds.
References and Further Reading: