So Your Child Needs a Feeding Tube—Here's Everything You Need to Know
Your first step as the parent of a tube-fed child: Don't panic—you've got this. Next, get to know this super-important tool designed to keep your child healthy and thriving.
Has your pediatrician suggested a feeding tube for your child? If you're experiencing a rush of emotions—from sadness to worry to full-blown panic—you're not alone. Nearly 200,000 American kids use feeding tubes for some, or all, of their nutritional needs.
That means more than several other parents know exactly how you feel.
"Tube-feeding can be a traumatic thing to accept," explains Garey Noritz, M.D., a pediatrician and chief of the complex health care program at Nationwide Children's Hospital in Columbus, Ohio. "Many parents may think they've done something wrong when their child has trouble eating or feeding—but that's not the case. A feeding tube is simply a tool we use to keep a child well-nourished. It's there for us to use as long as we need it."
Overwhelmed? Take a deep breath. "There may be a bit of a learning curve," says Dr. Noritz. "But a feeding tube can help your child grow and thrive."
Here's a guide to get you started.
Why might my child need to eat through a tube?
According to the Feeding Tube Awareness Foundation, there are more than 300 conditions that can require children to receive nutritional support through tube feeding. "There are several reasons why kids may have difficulty swallowing food," explains Julie Sanville, D.O., pediatric gastroenterologist at Dartmouth-Hitchcock Medical Center in Lebanon, New Hampshire. "One of the main reasons is premature birth, but sometimes anatomical differences can impair feeding abilities, too. There might also be allergic conditions, genetic issues, or gastrointestinal problems, just to name a few."
Dr. Sanville also notes that certain medical conditions, like cystic fibrosis or cerebral palsy, might also warrant a feeding tube. Dr. Sanville adds, "Children with significant behavioral or mental health concerns, like sensory disorders, severe anxiety, or avoidant restrictive food intake disorders, may have difficulty around feeding time or refuse to feed altogether."
The bottom line, regardless of the reason why your child might need a feeding tube: It all comes down to math. "Kids need to take in more calories than they expend every day to gain weight adequately," explains Dr. Sanville.
Is tube-feeding forever?
Not necessarily. Kids with serious medical conditions may require feeding tubes for their whole lives, but for others, it's just temporary, explains Dr. Noritz.
"For some kids, the ability to eat gets better over time," he explains. "Intensive feeding therapy can sometimes get them off their tubes and onto regular meals by mouth." And other children may even develop a hybrid eating pattern, having part of their meal by mouth and the rest through a tube.
How does a feeding tube work?
Feeding tubes come in a couple of basic varieties: Those that provide nourishment through the nose, and those that go in through the tummy. Both types bring liquid food from a bag or syringe directly into your child's body through a tube that hooks up to a port called a "button."
Despite how scary-sounding that might be, tube-feeding is actually a pretty simple, painless process: You can hang the bag from a hook on the wall (or, for older kids on-the-go, in a specially designed backpack) while a pump feeds the formula through the tube at exactly the right pace. Some kids have bolus—or meal-size feeds—every few hours, while others have smaller, continuous feeds during the day or overnight.
Here's what you need to know about types of feeding tubes and feeding tube placement:
- Nasal tubes. These go into your child's body through the nose, down the esophagus and into the stomach (NG tubes), or directly into the small intestine (ND or NJ tubes). They're used when your child needs short-term help getting nutrients or medicine into their system—for example, after surgery. Your doctor will place these tubes during an outpatient visit.
- Gastric or gastronomy tubes. The most common kinds of feeding tubes, these are used when your child needs help with feeding for a longer duration—at least three months. They're inserted into your child's abdomen and go into the stomach (G tubes or PEG tubes) or intestines (GJ or J tubes). Your child will go to the hospital for a short surgery followed by a few days of careful monitoring. Dr. Noritz acknowledges this particular moment can be a stressful one for families. "Even though it's a routine procedure for medical professionals, we know that it's always a big deal for parents."
What food will my child receive through a tube?
You'll work with the doctor and nutritionist to find the right food for your child. "For a baby," explains Filomena Kersey, a registered pediatric dietitian on Dr. Sanville's team at Dartmouth-Hitchcock, "we always want to use breast milk, at least partially. Or we'll use a regular or specialized formula—for example, one that's made a baby with a food allergy or a problem absorbing fats."
For older kids, it can run the gamut, says Kersey. "We choose a formula depending on what the child can tolerate and what the underlying medical issue may be—there are so many options available."
Kersey advises caution with homemade formulas for tube-feeding. "You have to be very careful about food safety," she explains, noting that some homemade formulas expire sooner than those you can buy. "For some kids, it can be hard to meet all their nutritional needs with homemade formula. If you're thinking of blending your own foods, it's a good idea to work with a dietician."
How do I care for and clean the tube?
Taking care of the tube and administering feeds isn't hard, but it does take a bit of training.
"After a couple of weeks, cleaning your child's tube will be just a regular thing you do every days," says Dr. Sanville, noting that you'll initially learn to care for the tube while your child is in the hospital by working with a baby doll with a tube attached. Then you'll graduate to working on your child's tube under a nurse's supervision. Dr. Sanville notes that, after you're sent home, you're seldom alone: You'll be sent home armed with a ton of information (and will likely have your child's care team on-call for help whenever you need it).
Caring for your child's tube is simple: You'll use a clean feeding bag daily, and after each feeding, you'll flush out the food from the tube using water from a syringe. Then you'll wash all the other parts in warm, soapy water.
Are there any complications I should be aware of?
Luckily, says Dr. Noritz, major problems associated with feeding tubes are pretty rare. "Most of the glitches are pretty minor, like irritation around the button or leaking." That's why you'll be given detailed instructions that take you through all the steps of administering and caring for your child's feeding tube. "Nobody was an expert the first time they drove a car or rode a bike. You can do this."
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And don't forget to reach out to your child's care team for even the smallest questions. "Parents appreciate knowing they can call us any time of day," says Rebecca Desrosiers, R.N., a pediatric nurse at Dartmouth-Hitchcock on Dr. Sanville's team. "If they're puzzled about something, they can snap a picture and send it to us and we can walk them through it. Whatever their question or concern, we're happy help."