Jacob & Lili

Jacob & Lili

Thursday, April 19, 2012

The Feeding Tube Diet

This week has brought out the mama bear in all of us with children who survive because of their feeding tube. Apparently the new diet trend for blushing brides is a feeding tube. The NG tube is inserted through the nose, goes down the esophagus and empties into the stomach. Through the tube, these woman receive a 800 calorie formula per day for 10 days. The goal is to lose 10 to 20 pounds. Extreme dieting has always been a part of our culture. Women have used drugs, shakes, low carb diets, low fat diets, eat only green food diets, don't eat anything that is white diets and dabbled in various surgeries. But the feeding tube diet seems to have really hit a nerve.

Over the summer Jacob became severely sick. We couldn't control his symptoms and various food eliminations and drugs were not working. We made the decision to stop all food. To do this he would have to ingest 1800ml of a special formula everyday. The formula is just plain disgusting. My husband was brave enough to try it and said, "it tastes like dirt." So how do you get a very picky 8 year old boy to ingest 1800ml of a dirt flavored formula, everyday. You insert a NG tube and pump it directly into his stomach. When we made the decision, we knew we would face a number of questions. "Isn't there another way?" "You're going to do what!" "It's all in his head, just make him eat." "No food, why would you do that to him?". And then we would face the stares, the only outward sign that Jacob was indeed sick. We fought the GI, the pediatrician, and I was very aware that we could end up in a battle to keep control of our son's medical treatment. Fortunately, it didn't come to that, but for many parents it has. Once the NG was in we saw a difference within a week. His pain was subsiding and my silly boy was coming back to me. This was reassurance that we had made the right decision despite the emotional pain that this treatment inflicted on us. Feeding our child and the joy that comes with that was no longer part of our world as Jacob's parents. Jacob now has a G tube and is doing well. He's gained weight! And slowly he's getting a few foods back.

So what baffles us parents is the attitude these woman and the medical staff seem to have with this "diet". They seem to be proud of this discovery. Having a feeding tube and carrying around their feed seems to be almost a symbol of status; look how much money I can pay to become thin. Meanwhile, us parents are tortured everyday when we see other children eating at will, knowing that our kid may never be able to eat even the simplest of foods again. We have to fight against the stigma of having a chronically sick child. We have to fight the medical community to do what we know is right for our child. And yet, these woman, don't seem to see the image they are projecting. Seated side by side, a woman with a feeding tube praising her doctor for putting it in because she has lost so much weight. That it didn't hurt putting it in, it was no big deal. And now she can fit into her size whatever pants. And next to her is the child who looks healthy, with his feeding tube. He looks like he's got weight on him, is growing, but he isn't allowed to consume any foods, none at all? Who cries at the mention of having to perform a tube change because it means being held down and mom crying in the corner as she watches.Really stop and think about where your judgement would be directed; the woman who has found this ingenious diet or the mom who seems to be torturing her child?

Maybe it's hard to understand where we are coming from. You never really can understand until you are in it. But please think about those children and adults with feeding tubes who need them to survive before you laugh at these silly women and comment how gross the tube is and how ridiculous it is to carry that bag around every day. This is what we do everyday. We deal with gross everyday.  If anything I pity these women. Trying to loose weight using a feeding tube is a choice. A feeding tube for those who are sick means life.

The Maupin's

The Maupin's