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Wednesday, April 10, 2013

Tube Feeding: Not a "one-size-fits-all"

My first introduction to tube feeding was at church. I was in the mothers’ room feeding my baby, and another mom came in with her 7 year old son, who had severe spastic quadriplegic cerebral palsy. She made friendly conversation while she expertly connected a syringe and bolus extension to his G tube with one hand while popping the tab on a can of formula with the other, and then gravity fed him without spilling a drop. Having never seen anyone do a tube feeding in person before, I was intrigued and she was very open in explaining what she was doing. I was impressed by how easy she made it all look, and even more so in retrospect. That was also my first exposure to the fact that older children can live off of formula. Who knew?

My next introduction to tube feeding was through a friend whose baby had been diagnosed with eosinophilic esophagitis and had an NG tube. When she explained more about what his diagnosis meant, I couldn’t help but ask what they were feeding him since there were literally no foods that were safe for him. She pulled a pitcher of Neocate out of the refrigerator. Two years later, I was mixing Neocate to feed my own daughter through her NG tube. I equated feeding tubes with formula.

I don’t remember when I first heard of putting pureed food through a feeding tube, but it made sense to me. The people I encountered that were doing a fully “blenderized diet” for their children had very compelling stories about why they chose to feed their children “real food” as opposed to commercial formulas. At one point, we were experimenting with blenderized food but it never really got off the ground for us. Making blended food that was a small enough volume with high enough calories and the right balance of nutrients was difficult for me. Plunge feeding it into a very active toddler who wouldn’t keep her hands to herself while trying to manage mealtime with 3 other kids never went well either. Before long, gastric dysmotility and multiple food allergies squelched my attempts at partial blenderized diet. It was disappointing. After having read so many accounts of mothers who were feeding their children perfectly balanced diets of various grains, fruits, vegetables, lean protein sources, healthy oils, and broths, I felt a little guilty that I had failed at blenderized diet, even though it just wasn’t medically appropriate at that point in time.

I’ve thought about those feelings of guilt and disappointment often in the last couple of years. In many online forums, there tends to be an overall air of negativity towards formula in general. A simple Google search for “breastfeeding vs. formula” will yield 5.5 million results that argue both sides of the age-old debate. After having successfully breastfed my first 3 children, it was heartbreaking for me to be told that I could no longer breastfeed the 4th baby. Not only could I not breastfeed her, but after 2 months of painstakingly watching my diet so that I could pump and freeze breastmilk for her, we realized that she would never be able to use it. At that point, formula felt like my enemy even though I knew it was the only thing keeping her alive. Acceptance of formula did not come easily to me. I had to work for it, but I eventually made peace with the cans of smelly powder and liquid that showed up on my front porch every month. That did not mean that there was anything wrong with formula, or with any of my friends or family members who chose to use formula, it just was not what I had planned on. The choice to breastfeed had been taken away from me and that was hard. That was my personal feeling, but ultimately I was incredibly grateful for the formula that was keeping my baby adequately nourished when my breastmilk could not.

Within the world of tube feeding, the trend towards blenderized diet over commercial formula seems to be taking on a similar tone to the breastfeeding vs. formula debate. I sometimes cringe when I see what people write about formula in online forums. There are claims that it is nearly always better than commercial formula, references to commercial formula as “goop” and “chemically processed science in a can,” and touting the virtues of lovingly preparing a blenderized diet rather than use “synthetic formula with a long list of ingredients that you can’t even pronounce”. Here’s the problem with that undertone. There is no inherent virtue in any particular method of feeding a child. The virtue is in doing what is best for that child, no matter what that may be.

Truth be told, there is a large population of individuals who have only mechanical reasons for being fed with a tube. Many people lose the ability to eat due to cancer or stroke. Some simply cannot consume enough calories in a day to maintain a healthy rate of growth, and still others are unable to swallow safely. In the absence of medical conditions that preclude regular foods as an option, a blenderized diet of healthy foods is obviously much more natural to the digestive tract than a diet consisting strictly of commercial formula. However, for a large population of individuals with feeding tubes, there ARE medical conditions in which using a blenderized diet could be largely detrimental to their health. In our case, a wide variety of known food allergies and protein intolerances coupled with dysmotility make it incredibly difficult to find adequate sources of all of the nutrients that are provided by commercial formula in a caloric density that is well tolerated. I WISH that this was not the case, just like I WISH that I could have kept breastfeeding, and just like I WISH we had never needed the tube to begin with.

Not every woman who feeds her baby formula is compelled to do so for medical reasons, and not everyone has a medical reason for not doing blenderized diet. To be honest, even if the medical reasons had not been there, I’m not sure that a 100% blenderized diet is something that would be feasible for me at this point in time. There is nothing wrong with that, and there is nothing wrong with me as a parent for choosing formula over blenderized diet. It doesn’t mean that I’m lazy, or somehow not as loving as the mother who chooses blenderized diet, it just means that my life is different than hers.

Just as there is no inherent virtue in a woman’s decision (or lack of choice) to breastfeed or use formula, there is no inherent virtue in choosing to use a blenderized diet versus choosing (or lack of ability to choose) to use a commercial formula. Those of us whose children are unable to subsist on “real food” are eternally grateful for the technological advances that have led to the development of these highly-specialized formulas that keep our children alive and thriving, and I would venture to say that those who ARE able to do blenderized diet are eternally grateful for the ability to select food of their choosing and prepare blenderized meals for their children. The bottom line is this: there is no one way to use a feeding tube. Each individual does what he or she feels is best for his or her child and family, and no one needs or deserves to be made to feel like that choice is wrong or “lesser than” someone else’s choice for their family.

(This post is featured today on "All Things Tubie")

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