Feeding Tube Awareness Week Feb 6-12

On a normal day I don't usually bring it up . But occasionally I get questions about my oldest boy, Joe. He wears a small backpack most of the day and we get comments like "He must really like that thing!" or "Why do you make him carry that everywhere?" Most people just get a smile and nod others get a deeper explanation. Joe has several gastrointestinal issues which have led to tube feeds since six weeks of age. Inside that backpack is a pump that slowly puts food into his intestines. Although his condition is not very common tube feeds are more common than you think. I remember registering Joe for Kindergarten and they wanted to put him the Special Needs class because they had never seen a child with a feeding tube that wasn't handicapped in any other way. Joe is a very average kid...he just eats differently...and there are hundreds...thousands like him. And we need to raise awareness that this is not "life support" and that a lot of insurances don't like to cover the prescription formulas that need to go through the tubes which can be extremely expensive (Joe goes through a $50 can of formula every 2 days).

There are several different kinds of tube but they all do the same basic need, to provide nourishment . A NG tube goes into the nose and down to the stomach. Almost any preemie baby in the NICU is seen with one of these because they don't have the suck/swallow reflex yet. NJ is again through the nose but guided into the intestines. A G tube is a button surgically implanted into the stomach, and GJ is an external button that goes to the intestines. The NG and NJ are usually used for short term, like the preemies. The G and GJ are more long term use tubes.

Joe doesn't think he is any different than you or me, which is how all tube fed patients should be feel. He answers questions when asked and goes on with his everyday life. So if your child asks you about a boy/girl that wears a backpack or sees the button on a boy at the pool, inform them just like you would if you saw a child with an inhaler or in a wheelchair. Simple and matter of fact. "He was a very sick baby and that's how he eats now," is what I tell most children when they ask me about Joe. No big deal...Joe doesn't think so so why should I? :o)