How do you know you need a feeding tube?
When my newborn son first started having issues with feeding, I didn’t even realize feeding tubes were an option. I was a bit overwhelmed. As a new parent, I didn’t anticipate feeding and medical challenges. Who does? Our decision to get a nasal gastric feeding tube (tube that runs through the nostril down the esophagus to the stomach), wasn’t much of a decision. It was really our only choice. My son was aspirating food into his lungs, he had laryngomalacia (floppy airway), severe reflux, he couldn’t coordinate eating and breathing at the same time and he was turning blue. He was 2 months old when we added on the Failure to Thrive label and moved to tube feeding. We discovered just how poor his suck response was when we tried to do thickened feeds by bottle.
A number of families enter into tube feeding without having a choice, when there is an obvious issue that prevents feeding – to name a few broad categories: genetic conditions, neurological conditions, structural issues, pulmonary, and cardiac conditions.
But, many find themselves faced with a true decision. They have a child who is eating and drinking orally, but not enough to gain weight. Often that child receives the Failure to Thrive (FTT) label. There isn’t a standard definition of what constitutes FTT. However, it is commonly judged by failing to gain enough weight to support expected growth. Doctors may talk about “falling off their curve” referring to the percentiles on growth charts and where they expect a child to be. A child may not gain or grow for months at a time during periods of more rapid childhood development, or make too little progress. Attempts are often made to make food more caloric, to encourage more eating or drinking. But, a child may be spitting up or vomiting, experiencing diarrhea, and they may increasingly refuse food.
By the time you discuss tube feeding; many things have already been tried. Tube feeding is often the last resort, and very rarely a first-line treatment option. Malnutrition and dehydration aren’t to be taken lightly, particularly in young children. Malnutrition can have long-term effects on growth and development. Moreover, those who are undernourished are more susceptible to illness and will take longer to recover. The primary goal of your medical professional may be to get the child adequately nourished and hydrated, with the full focus on weight gain.
Tube feeding can be a scary prospect for parents, but it doesn’t have to be. If you are faced with the decision to tube feed, here are some questions to consider:
- Is my child safely able to eat and drink enough to grow and develop appropriately?
- Will my child be able to catch up on necessary weight gain on his own?
- Is my child using too much energy to eat and drink?
- Does my child have a medical condition that will make it more difficult for her to maintain a healthy weight?
If there is a path for your child to catch up on their own by safely eating and drinking, then you do not need to begin tube feeding. But, if your child hasn’t been able to catch up and isn’t able to maintain growth and development, your decision is made.
What we hear most often from parents who were reluctant about tube feeding, some even putting off the decision; is that they wish they had done it sooner. The benefits of seeing your child gain weight, grow, thrive again outweigh any inconvenience posed by a feeding tube.
Tube feeding isn’t an easy road. The beginning can be tough. There is much to learn. What is being fed and the how often it is being fed can take some time to work out. If a child is fully diagnosed and their medical conditions are well understood, there may be an easier path. But, if a child isn’t fully understood (even if they already have an umbrella diagnosis), then it may take some time to hit on what works best for them.
My son didn’t get his umbrella diagnosis of a rare genetic syndrome until he was 20 months old, a full year and a half after he began tube feeding. For much of his first year, we struggled for him to gain weight, even with tube feeding. When we finally got on the right combination of feeding tube (there are different kinds), formula, and feed schedule, there was a dramatic change. His growth and development improved dramatically, he visibly felt better, was happier and slept better. He also got sick less often, which meant fewer trips to the hospital.
Even though there are about half a million people in the United States (with about 20% of which are children)1 who have feeding tubes, very little is known about them. There are a number of common misconceptions about tube feeding. The Feeding Tube Awareness Foundation is working to raise awareness, so that parents in this position will have the information they need, and feel less alone.
You didn’t try hard enough to make your child eat.
In our experience, parents try everything to get their children to eat. It is a natural instinct for a parent to feed his or her child. Some children require extra nutritional support to stay healthy. Tube feeding is a last resort; it isn’t a convenient alternative for lazy parents. Tube feeding allows children to get the
nutritional support they need to grow and develop, either when eating orally is not possible, or while exploring the medical reasons a child cannot eat and drink enough.
You can’t eat by mouth when you have a feeding tube.
Fact: Tube feeding can supplement what is eaten by mouth. As long as your child is allowed by her doctor to eat and drink, she can continue to do so after receiving a feeding tube. Oral eating should be encouraged as much as possible to maintain or develop oral eating skills.
Tube feeding is forever.
Some children have medical conditions that will require them to have feeding tubes their whole lives. But for many children, tube feeding is temporary. Children are able to wean off their feeding tubes once they are no longer medically necessary. It is often difficult to estimate how long a feeding tube will be needed, especially if the child’s medical condition is not yet fully understood.
A child’s physical activity will be limited by having a feeding tube.
Tube feeding itself does not limit a child’s ability to roll around, play, climb, run, swim or play sports. A child’s physical ability will not be impacted by having a feeding tube. Even children who feed continuously can wear feeding pumps in backpacks and still be active.
You will need a nurse to care for your child if you tube feed at home.
It is easy for parents and caregivers to learn how to tube feed safely at home. Nursing for tube feeding alone is not required or necessary. Very few parents have any medical background before they begin the feeding tube journey.
You must use formula for tube feeding.
You can tube feed breast milk, formula, or blended foods. The diet can vary based on your child’s medical condition and tolerance.
You have to get everything perfect, right away!
Just like everything in parenting, you will make mistakes and learn from them. Don’t panic when you do. We have all made mistakes. There is a bit of trial and error in the beginning. Tube feeding isn’t a one-size-fits-all situation. You often have to figure out what is best for your child. It is a step-by-step process, particularly when infants and children can’t tell you what they are feeling.
This blog is a first in a series of blogs for The Global Genes Project. The next one will focus on the different kinds of feeding tubes and tube feeding terminology.
1 Thriving with a Feeding Tube, EndoNurse, December 2012
About Traci Nagy and Feeding Tube Awareness Foundation
Traci Nagy is the Founder of the Feeding Tube Awareness Foundation, a 501(c)(3) non-profit organization (www.feedingtubeawareness.org). The organization’s facebook page is the largest online support group for tube feeding in the world. (https://www.facebook.com/FeedingTubeAwareness