8 reasons parents continue to tube feed their children

choose the most suitable tube weaning program fro your child

7 critical concerns when considering tube weaning

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In the early days of enteral nutrition, from antiquity until the twelfth century to be precise, there were attempts to deliver crucial nutrients to patients, who were unable to swallow, via nutrient enemas (German: Nährklistiere). Food was injected, as a clyster, into the rectum and consisted of puréed or liquid food: barley broth, soups, wine, sheep’s milk, buttermilk, melted fat, butter, olive oil, egg yolks and milk were among the tried and tested foods.  

As a result of the advancement of medicine and the discoveries about human physiology, the stomach took over from the rectum as the main organ responsible for food intake. Blended food was administered via oral and stomach tubes, which led through funnel-shaped silver cannulas at first (fig. 1), then through syringes (fig. 2), and eventually through tubes, made from varying materials such as leather, rubber, silicon and polyurethane, through the mouth or nose into the stomach. Over time, different types of tubes were developed, which made it possible to feed patients, who were, for example, missing a piece of the oesophagus, through the small intestine. The foundation for baby formula (which made wet nurses replaceable) was laid by Justus von Liebig and his “Liebig Soup” in 1866. Liebig’s soup consisted of cow’s milk, wheat flour, malt flour and potassium carbonate, and its aim was to provide milk for infants who could not be breastfed, or whose mother was unable to produce breast milk. Blended food has been used for hundreds, indeed thousands of years, and is still very popular today.


Fig. 1: Enteral nutrition in the 12
th century (Kalde et al., 2002).

EE17 Jhdt
Fig. 2: Enteral nutrition via syringe injection in the 17
th century (Kalde et al., 2002).

The agony of choice

The proverb says, he, who has the choice, has the torment. This also applies to the variety of available tube nutrition. For, ever since the first moon landing in the 1960s, it became necessary to manufacture a specific diet for astronauts. This diet had to be optimised for astronauts, who sometimes would spend months or years in space and who were dealing with a changed metabolism as a result of the loss of gravity. The food therefore had to be as effective as possible, high in calories and with a long shelf life. It was especially crucial that the astronauts produced as few faeces as possible, since their disposal was highly problematic. Following the success of the first moon landing, there was an increase in trips to space. Supply and demand led to a veritable boom in astronaut food. Parallel to that, and the large successes achieved by the placement of the first PEG tube in the early 1980s, the first tube formulas were developed. This was not just an opportunity for pharmaceutical manufacturers, but also meant that there was a way to standardise and optimise nutrition. For parents, it was supposed to be a way to calculate their child’s nutrition accurately and to avoid the dangers and risks of blended food.

Why blended food?

Blended food can only be given to children with a functioning digestive system. This is why it is not suitable for children with short bowel syndrome, nor for children with allergies and those with metabolic diseases. In some countries, the treatment team will recommend the use of blended food.

This was the case with Hugo, a five-year old boy from Sweden, suffering from cerebral palsy, whose parents and doctors had in the past decided to give him pureed food via his PEG tube. The mother strongly believed in it, especially since she felt she was doing something good for Hugo. “If Hugo is already different from other children as a result of his underlying disease, he should at least have normal food,” she thought. Clara, from Croatia, was a similar case. Clara, two years old, had a neurological degenerative disease, and, unfortunately, only a short life ahead of her. The parents loved Clara more than anything and only wanted the best for her. Since food is a big part of their culture, from their point of view, blended food was the only option for Clara’s tube nutrition. The parents felt they could thus introduce Clara to good Croatian cooking and make her feel the warmth of domesticity – and through it, give her a little taste of life.

Both examples demonstrate that the decision for giving blended food is linked with nutritive, psychological and emotional aspects. It is important to take these into consideration when choosing a type of nutrition with the parents.

Advantages of blended food:

  • Blended food is cheaper than tube formula.
  • Blended food makes the parents feel more like they themselves are feeding the child. It lies in the nature of parenthood to want to prepare food for a child, especially when the child is sick.
  • Blended food gives more of an impression of normality.
  • Some children tolerate blended food better than tube formula.

Disadvantages of blended food:

  • It can only be used with children who have normal nutrition requirements. It is not recommended for children who, for example as a result of metabolic issues, have an increased need for nutrients, or for children with other diseases, for example, for children with weak immune systems.
  • As a result of its texture, blended food can regularly cause blockages in the feeding tube.
  • The perishable nature of certain food items.

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Why tube formula?

The development of astronaut food led to the development of tube formula. Tube formula varies in the amounts of kilocalories contained in a millilitre of liquid. We differentiate tube formulas by energy density, usually from 0.5 – 2 kcal/millilitre. The ingredients are proteins, fats, minerals, vitamins, fibre, trace elements and water, essentially all the nutrients the child needs. Parents of tube fed children are confronted with a whole array of tube formula manufacturers (Nestlè, Nutricia, Hipp, etc.). The medical treatment team usually recommends what the parents should tube feed. Not every tube formula is equally effective. Some children tolerate the first recommended tube formula well. With others, several tube formulas have to be tried until the best tolerance is achieved. Some parents describe a cautious and tentative approach to individual tube formulas, since they had experienced, in some cases, side effects such as diarrhoea, strong reflux, gagging and regurgitation.

It was a similar case with Harry, one-and-half years old, from the United States. Harry was born in the 26th gestational week, suffered from severe reflux and failure to thrive. In the summer of 2015, Harry and his family successfully participated in the Netcoaching Program. During his tube weaning, his parents reported that when Harry was one year old, his local specialists prescribed a tube formula with one kilocalorie per millilitre. But Harry did not tolerate it very well. The results were excessive vomiting and frequent diarrhoea. These circumstances led to speculation about Harry suffering from cow’s milk protein allergy, which to this day has not been confirmed. Harry received tube feeds without cow’s milk. After that, Harry was noticeably better, but the situation was not yet ideal. The parents accepted the persisting side effects, since they thought it had to be this way. Only due to the reduction of tube feeds during the weaning process, did the previously occurring side effects disappear.

Advantages of tube formula:

  • Variety of different formulas available.
  • Ability to precisely calculate the nutritional requirements and nutrient composition.
  • High-caloric energy density.
  • Long shelf life.

Disadvantages of tube formula:

  • Sometimes not well tolerated.
  • High costs. Not every health insurance covers the costs.
  • Some tube formulas have a bad taste.

Is one type of tube feed always better than another?

There is no general way to answer this question. There is not the one and only kind of tube feed for a child. This is not possible, in principle, since every human has his own individual metabolism. Every child reacts individually to a specific type of tube feeding. This is why it has to be a matter of course that the doctors know the child prior to placing a feeding tube. This way, they can make a recommendation based on the individual needs of the child and the parents. The nutritional status should be continuously re-evaluated during regular check-ups. If tube feeding is no longer medically necessary, tube weaning should be considered. The NoTube Team is here to help with that (help@notube.com).


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Link to E-Book: 3 Types of Feeding Tubes & Their Side Effects