Alot of people hear the word reflux but never realize the impact that it can make on one family. Some view it as simple spit up, oh all babies do that. Some think oh, they'll grow out of it. Or, I have heartburn it's not that bad.
Can you
imagine being an infant where Mommy and Daddy are supposed to take care of you, you can't speak you can only scream and cry for what you need. Now imagine that you are in immense pain each time you eat. Puts a new perspecitve on reflux now doesn't it. Some adults have describe their "heartburn" as feeling like they are having a heart attack, a serious buring sensation. The picutre just gets more grim when you think that some little, little babies feel the same way but have NO MEANS to communicate this pain.
Our son is one of the very few children in a growing number of children who has SEVERE reflux. Now by severe I mean, he has stopped eating all together. He has associated ALL EATING with that pain. So one day he just stopped eating. Now, we already had a feeding tube in place because we knew that one day he WOULD stop eating. (He had a heart defect that was not helping as well) His pain was soo severe that we used to have to STRAP him into a bouncy set just to TRY and get him to eat. At 12 weeks of age he would scream at the sight of a bottle, kick it onto the floor and snap his mouth shut. Now, he was hungry, he just so badly did not want to be in pain that he would not eat. We had NO CHOICE but to have to use the feeding tube at that point.
Without his feeding tube he would have DIED from starvation and gladly done so, he feels no hunger pains as well. As you can see, we never got to hold our son and feed him. Feeding was a constant battle since day 1, we called it "WAR". There are NO happy memories here of holding our newborn as he gladly takes the bottle. The only time he did that well was when he was on STRONG pain meds. after heart surgery. The pain medication was dulling the pain of the relfux so that he could not feel it, so he gladly ate. I wept every time he would take the bottle that way. We could not KEEP him on those medication permantely, they were not meant fo rlong term use.
Here is a quick list of the types of feeding tubes: 1. Naso-gastric, this tube goes down the nose and into the stomach. It is used as a temporary means to deliver food into a child's stomach. 2. Gastric feeding tube (g-tube for short), used as a permant means of delivery food gastrically. Requires surgery to place the tube into the stomach wall, has a feeding port that can be acessed form the belly. Gastric feeding tubes can be used to feed the stomach or into the small intestines. 3. J-tube, goes directly into the small intestines for slow feeding, usually done continuosly over 22-24 hours per day to deliver food from a pump. (G-tubes are also used with a pump.)
Some children cannot even tolerate an food in their stomach, they must be fed introveinously, into the viens. This is called TPN, Total Para-enteral Nutrition. That is for children with the most severe reflux.
As you can tell I am not talking about children who have "a little spit-up", these children, my son included, have serious GI issues that must be dealt with every day. Some, like my son, do not look sick. This makes it difficult when other do not FULLY understand the whole world of reflux. They don't understnd how he could just stop eating, I mean he looks soo healthy. They cannot eat certain foods, they take lots of meds., they have other issues realted to the reflux. Ear infections are common, as well as asthmas, and other lung and aspiration issues. All caused from relfux. Some children need to be on monitors at night because their reflux comes up, does not go out, but goes into their lungs causing "blue spell" where they stop breathing. They "forget" how to eat, so they must spend YEARS in intensive therapy to "re-learn" how to eat with out taking the food into their lungs. They neveer develope the skills to suck and swallow the bottle therefore they are set up for faliure at eating. The one KEY skill never gets learned so they struggle for years to come.
So, relfux, severe reflux, causes lots of strain on the parents of that child. The child requires alot of atteniton just to make sure they get enough calories, whether by mouth or by tube. Every thing they eat must be measure for volume to ensure they don't get dehydrated or malnurished. Can you imagine the strain??? Some families have multiple children like this.
Now, imagine trying to go to the mall or the store with a child like this. Mere car rides can be eventful, they can cause reflux if the stomach is too full. ALL our trips out and about town must be timed around a "feeding" or a medication dosing. Life revolves around trying to keep him helathy and growing. With 4 "feeds" a day and 6 medication dosges a day, that is NO EASY feet. But this is the life we were gievn to take care. I owuld trade him for NO OTHER child. Even with his multiple surgeries and NON eating. This is the road we travel every day. I have learned that there are MANY others on our trip as well. It is full of doctor's visits often, medical supplies, and I.V. poles, a nd pumps and tubes, but it is the NORMAL for us, we know no difference. This is what we call "OUR NORMAL". We don't know what it is like to have a child who just eats.
So, what do I want you to learn from this. If you only take away one thing it should be this....
Never, I mean NEVER take for granted that your child does simple things......like eat........some children struggle for years to master that skill. Don't take for granted that you have a "healthy" child.
(December 2007) (
