What we can offer you

This site offers you and your child help by informing you about infantile eating behaviour problems with the emphasis on tube dependency, by sharing some of the knowledge gained in this field where very little know-how has been documented for the general public to read and learn, and by providing you with the possibility of joining our netcoached tube weaning program or visiting our clinic as in- or outpatient.

Learning to eat is a normal process in a child's development, needing common sense and a basic set of parental skills in sensitivity, cue reading, commitment to want to feed and an engagement for the child's growing sense of autonomy and self competence.
However, when a baby is born prematurely or suffers from a physical anomaly needing surgical intervention right away or is suffering from any other severe paediatric disorder, then things are all different. The most normal things are not working and often eating and learning to eat is one of these essential normal developmental things that suddenly fail to develop normally in what way a feeding tube is given to the infant or child.

What is tube dependency?
Tube dependency is a distressing and unintended result of tube feeding in infancy. The condition of tube dependency can be defined as active refusal to eat and drink, lack of will to learn or the inability and lack of motivation to show any kind of precursors of eating development and eating and drinking skills after a period of gastric feeding. It is characterized by overt disinterest, food avoidance and active refusal, gagging, vomiting, oversensitivity, fussiness and other oppositional and aversive behavior. It may influence the quality of life of the affected infants and their families to such a degree that all other troubles fade into insignificance besides the nightmare of a child who will not eat or drink. Nevertheless, tube dependency is not recognized as a problem by many pediatricians.

What is the best age for tube weaning?
As early as possible! The development of normal eating behaviour in the healthy child lasts from birth to the 12-18 month. This is the natural time needed for the transition of the breast-, bottle-, or spoon-dependent infant to the self feeding toddler. Most enteral tubes given at the time of birth end their specific purpose and indication by the age of 6-12 months.
If your child can swallow its own salvina and can sip small amounts of water with no difficulty of choking, coughing or gagging, then there is a very good chance that tube weaning can succeed.

So what do we exactly do?
This is not so easy to describe, although we do not try to make a secret about our expertise and experience. Quite on the contrary, we are involved very intensively in teaching and coaching of many teams in many hospitals around the world and have developed many teaching tools. But it seems to be that there is a whole philosophy and developmental theory involved and the education of some doctors and many members of medical backround has not equipped them with this kind or way of thinking.

There are basically 2 main goals of the treatment:
- On the physical level (somatic approach): let the child be hungry
- On the developmental level (psychological): increase autonomy

These two simple goals must be respected and understood on various levels by the child itself and the caregivers involved. However, each family system and patient is different and this makes it necessary to modify each weaning process a little, even though the philosophy beneath is the same.

What we refuse to do
We do not harm or starve children! In cases of tube dependency we reduce the volume of the formula feeding by the tube in preparation of the child’s start to increasing its oral feeding. Without hunger, no child will start to eat substantially. Only by getting to know the new sensation of hunger, a formerly tube fed child will learn to use this cue for self regulation of its hunger-satiety cycle. We do not use the parent’s presence as part of a behavioural strategy; we do not allow any kind of force feeding. We believe in supporting the child in this important developmental challenge by having as many members of its family around; mother, father, siblings and grandparents. The point of this is to give maximal support on a systemic level so as to motivate the child to express new feeding and eating skills and behaviours.

Contraindications for tube weaning
There are some contraindications for the tube weaning program, which might need further investigation before we start working together:

• In cases of children with operations within the mouth, palate, pharynx or gut, oral feeding might be prohibited for medical and mostly mechanical reasons, but mostly only for the first few days or weeks. Please ask the physician responsible and in charge for your child if oral feeding would basically be allowed and recommended from his or her point of view. 
• Children suffering from disorders of inborn metabolism requiring very specific diets, which might taste badly.
• Infants with severe difficulty in swallowing and the danger of aspiration of food and liquid into the lung.
• Our program is not for infants with permanent tubes but only for infants with tubes that were intended to be temporary.

Please discuss and inquire about the question of suitability of your child to be weaned off its feeding tube with your team of doctors. Furthermore, if any of these contraindications affect your child, please contact tubeweaning@notube.at in order to discuss whether a tube weaning therapy is possible or not.