8 reasons parents continue to tube feed their children

7 reasons to free your child

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What is the best time for tube weaning for my tube fed child?

When a child needs a tube as support to compensate for insufficient oral intake, it will be a temporary or a permanent intervention. Please ask your doctors clearly and frankly what the estimated time of enteral feeding will be. They are not prophets but will mostly be able to determine if the tube placement is regarded as a permanent measure or only as a temporary intervention. Additionally they will be able to give you a set of clear goals which – in the case of temporary tube placement – should be achieved by the expected period of enteral feeding. To increase your feeling of being involved in the decision, please discuss the topic of the intended duration of tube feeding and define goals and criteria and an exit strategy together with the medical team in charge.

Tube-free childBasically, a time will come (after a few weeks or a few months) when the medical reason for needing a temporary tube is completed and the child will be allowed to make the transition to or back to oral feeding. Any temporary feeding tube should be removed as early as possible and as late as necessary. The older your child gets, the greater the risk is of developing tube dependency! This can be explained through the process of the child’s sense of identity of being a “tube child” on the psychological level as well as of becoming used to externally regulated highly structured meal routines on a biophysical level. Before starting the weaning process, the child must be in a stable medical condition. The duration of tube feeding should have clearly passed the intended goals for the original indication.

Preferably – in the case of tube placement in the neonatal phase – tube weaning should happen between the ages of 4-12 months. It helps, if your child is already able to sit and be able to focus and interact frontally with the feeding person.

Behavior and feeding skills

Please observe and watch your child´s behavior carefully! It should be possible to notice first symptoms of emerging feeding skills: interest in food, beginning of oral skills (babbling, sucking, licking, tasting), motivation to eat. Feeding skills develop step by step. Safe oral stimulation with real food or toy food can help, but should be supervised. The child should be involved in preparing meals and have the opportunity to touch and taste real food. An environment providing food in a relaxed and natural way is essential.

Fear of weight loss

Fear of weight loss is commonly the main argument of parents against the idea of tube weaning. From the medical point of view, weight loss should not exceed 10% of the initial body weight and should be regained in the course of 2-3 months following the weaning process. Often, when enteral fed infants are even a bit overweight, the weight loss might even have positive effects on motor development and self help skills. Tube dependent children show characteristic symptoms such as food refusal, opposition to any oral feeding attempts, in some cases vomiting, nausea, gagging and retching. Furthermore they may be developmentally delayed! Tube dependence can be prevented if typical symptoms are recognized early and effective tube weaning is implemented – there are different tube feeding weaning approaches! One well known and standardized tube weaning program is the so-called „Graz tube weaning program“. Theprogram is helping children with early eating behavior disorders.

Presence of hunger

Tube weaning is not possible without the presence of hunger! Therefore it is necessary to reduce feeding volumes in a controlled and medically supervised manner. No satiated child will show oral activities! It is unsafe and not recommended to wean ones child without medical supervision, as medically fragile children can react very critically to the change in feeding routines and might need immediate professional intervention.

Why support?

tube-free childIt is very important that you get supervised through a team of specialists to avoid life threatening situations especially in medically fragile children. Most tube fed children will not just start to eat and drink on their own. You and your child should be supervised professionally. The team involved with your child will help you support your child and will give you specific advice. Your child will not learn to eat because it is expected but only by self motivation and an increase of feeding skills. Constant offering food or intrusive feeding is here on a wrong place!

Your child may show food refusal, vomiting, ignoring offered food, lack of motivation to taste food and more during a weaning process. Thus, additional support will be necessary and is be offered as an internet assisted Netcoaching, where your child remains at home and the medical and nutritional support is offered by telemedicine. Learning to eat in a self-regulated and sufficient manner is the goal and requires interdisciplinary expertise.

Marguerite Dunitz-Scheer