Feeding Tube Awareness Week: learn the facts

Feeding Tube Awareness Week: learn the facts

Posted by Spoonie Threads Staff on

February 6-10 is Feeding Tube Awareness Week. Learn the facts about this lifesaving medical intervention and debunk the some of the myths in this week's blog. 

We collected myths from several online sources and compiled them here for you. 

10 Myths Every Feeding Tube Family Wants You to Know from KidNurse Blog

MYTH #1: CHILDREN WITH FEEDING TUBES CAN’T EAT BY MOUTH
This is not always true. Many children who have G-tubes actually love to eat, but are simply not capable of consuming their entire day’s worth of needed calories orally. So, the tube is used only to supplement some extra nutrition, often at night. The tube in no way restricts the normal function of ingesting food the ‘regular’ way.

MYTH #2: CHILDREN WITH FEEDING TUBES CAN’T EAT REAL FOOD
While some children with severe food allergies can only have special hypoallergenic formula through their tube, this is typically not the norm. Nutrition can take many forms…breastmilk, formula, or even real foods.

MYTH #3: FEEDING TUBES ARE PAINFUL
Feeding tubes typically don’t cause pain or ‘change’ the child. They simply offer an alternate route to nutrition. Although some children will get sore spots near the tube’s insertion site, many barely remember it’s there once they become accustomed to having it.

MYTH #4: FEEDING TUBES ARE PERMANENT
While the tube itself my look or feel permanent, they are actually fairly easy to remove in most cases. Some kids only need their tube for a short while. For example, following a major surgery. Others rely on their ‘tubie’ long term like my daughter. Emmy’s not ashamed of her tube — that’s never even occurred to her. It’s just a part of who she is. Are parents happy when their child no longer needs it? Of course, but in the meantime, I am so grateful for the ability to provide my child with the nutrition she needs.

MYTH #5: FEEDING TUBES ARE SCARY
I often hear people tell me “It must be scary for you to see your child with the tube.” It’s actually not scary at all! It was much more scary to see how sick she was without it. Once we learned how to use it, we adapted quickly.

MYTH #6: FEEDING TUBES RESTRICT WHAT A CHILD CAN DO
The only real restriction we have is “try not to pull it out.” And if it comes out, it’s honestly quite easy to put it back in. Otherwise, our little one goes to school, swims, plays at the playground, and goes to the beach. She does pretty much all the same things her twin sister does.

MYTH #7: KIDS WITH FEEDING TUBES ARE SICK A LOT
I once had a woman look at my daughter’s feeding tube and tell me, “it must be hard for you to see your daughter sick so much.” The truth is, Emmy was having a totally normal day. While people may assume that a feeding tube equals severe illness, many children with feeding tubes are otherwise healthy.

MYTH #8: MEDICAL PROVIDERS KNOW EVERYTHING ABOUT FEEDING TUBES
When I entered practice as a Pediatric Nurse Practitioner, this is how I felt. I had a big book in my hand and I thought, “I’ve got this. I know how to handle a child with a feeding tube.” And then I became a parent to a tubie and found out that, boy, was I wrong.

MYTH #9: IF YOU LET HER GET HUNGRY ENOUGH, SHE’LL EAT
I wish I had a dollar for every time I’ve heard this one. It’s probably one of the most frustrating arguments I encounter as a tubie parent. I’ll admit, we tried this approach a few times. But there are many reasons this is just not feasible. In my daughter’s case, it’s globally weak muscles. For other kids, it may be a sensory disorder. Regardless of the cause, there is no reason to deny your child the nutrition they need and deserve. It may look different on the outside, but fed is best!

MYTH #10: FEEDING TUBES ARE A LOT OF WORK
It’s a challenge to learn how to use the feeding tube at first, but when I compare my tubie to her twin, the tube is no more work than convincing a strong willed 3-year old to eat her vegetables. As my daughter gets older, we have found the fun in feeding tubes. She loves to help push her medicine syringes to give her own meds and help prepare her food. And she’s learning a lot about nutrition in the process. Win-win!

 

The Feeding Tube Awareness Foundation lists the following common myths about feeding tubes  

MYTH: You didn’t try hard enough to make your child eat.
FACT: 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. 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.

MYTH: You can’t eat by mouth when you have a feeding tube.
FACT: Some children benefit from tube feeding because they can’t eat enough by mouth. Others need tubes because they can’t eat some or all types of food safely. If your child can eat safely by mouth, oral eating should be encouraged as much as possible to maintain and develop oral eating skills.


MYTH: Tube feeding is forever.
FACT: 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.

MYTH: You have to get everything right, right away!
FACT: Just like everything in parenting, you will make mistakes and learn from them. Don’t panic when you do. We all have made mistakes. There can be a bit of trial and error in the beginning. Tube feeding isn’t one size fits all. Learning what is best for your child is a step-by-step process, particularly with infants and children who are unable to tell us what they are feeling.

MYTH: A child’s physical activity will be limited by having a feeding tube.
FACT: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.

MYTH: You will need a nurse to care for your child if you tube feed at home.
FACT: It is easy for parents and caregivers to learn how to use the feeding tube safely at home. Very few parents have any medical background before they begin the feeding tube journey.

MYTH: You must use formula for tube feeding.
FACT: You can tube feed breast milk, formula, or blended foods. The diet can vary based on your child’s medical condition and tolerance.

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