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This article is the last of a three part series looking at important information before, during and at the end of tube feeding and is aimed to highlight both the positive and negative effects that can result from tube feeding from the perspective of the child, parents and health care provider.
Most children tolerate tube feeding and succeed in meeting their nutritional targets, especially if they have been tube fed from birth. They quickly learn that the mouth only exists for making noises while their food arrives via a plastic tube. They experience no smells or tastes, just a large volume of enriched formula pumped in every few hours. Possibly they have managed to accept some tiny tastes on their lips, but usually any offering of oral feed is met with disinterest or refusal.
On average this group of children will be tube fed for 3-6 months, and when they meet their nutritional goals, have stable lung function and safe swallowing they should easily transition to oral feeding as long as they have been able to preserve some basic oral activity. When oral skills are present they undergo gradual but hearty reduction of the tube feeds under medical supervision while simultaneously increasing oral intake. A child who is interested in eating without any emotional hesitations or aversive sensory issues will be more than happy with the tube feed reduction, starting to feel a natural appetite and will advance confidently towards food. Beginning with touching, holding, licking, biting, tasting and swallowing small amounts of whatever is available within a few days. Children who can sit upright unaided may have reached an age of independent activity and be candidates for finger food, any kind of solid or semi-solid food which can be portioned and picked by the child themselves. Younger children will transition straight onto blended baby food or bottle feeds.
From a child’s point of view learning to eat is as natural and normal as any other step in development. In a confident, supportive environment they should pick up the skills without needing any prompting or manipulation. The best environment for learning to eat is in a group of children such as in nurseries, kindergartens or at children’s parties. Adults are not always helpful in the process of learning to eat, often making too much fuss, trying to force the child to imitate them or, in manoeuvring the child, risk provoking irritation and refusal. The best way to learn with the family is to have the child join in the normal mealtime culture and allow some time to explore and experiment. Most of these skills will develop better and faster the less conscious attention you give them.
A minority of children do not adjust to tube feeding with ease and seem to get very little benefit from it; this may be the reason you are reading this now. The poor child is faced with daily trauma from being fed; they may frequently pull out the tube, only to have it forcibly replaced (with the best intentions). Feeding times become a battle between the child and caregivers, even if the child reacts with vomiting, gagging, retching and repeated tube removal the tube feeding must go on, like a daily torture for child and parent alike. The clock, calculator and scales become dictators of a regime of power struggles, desperate to make an improvement to the child’s poor growth. Despite the emotive descriptions no person faces any blame for this, everyone is acting in the child’s best interest, but sometimes what is needed is to take a step back, look objectively at the problem and find a way to break the cycle.
For parents the period of tube feeding can be both a relief and a worry. When the tube feeding is successful it is wonderful to see your child finally growing but it can feel unnatural and detached to feed your child via a tube. Even though you know your child was too immature or ill to be fed orally you can often find yourselves feeling ashamed or guilty. Psychological support is helpful when you are drowning in these negative emotions.
Parents will naturally start to wonder about the cessation of tube feeding, either when your child meets his or her treatment targets, or if the tube feeding seems to be traumatic and unsuccessful. In the case of your child meeting the treatment targets you should hopefully be fully supported by a multi-disciplinary team using standard weaning strategies. These must be offered under continuous medical and nutritional supervision and involve a team of specialised therapists.
The less successful the tube feeding the more you will find yourselves traumatized as parents and in this scenario you may have to suggest and push for tube weaning when every possible adaptation has been tried. You can find more information about this in the free eBooks available from NoTube.
From the medical perspective the phase of planning discontinuation of tube feeding can be straightforward and easy or ambivalent and conflicting.
When the child has successfully met his or her goals the weaning process should be straightforward. Unfortunately in current medical systems the child often changes care between teams and the professionals involved in fitting the tube are no longer involved in his or her care. Sometimes the child can be stuck in the system seeing only trainees, specialist nurses or dieticians and lack seeing a senior clinician to take responsibility for deciding to stop tube feeding. In this case the child may find themselves continuing tube feeding for longer than necessary due to lack of decision making rather than clinical need.
Since tube weaning requires the input and consensus of an interdisciplinary team including dieticians, speech therapists, psychologists and paediatricians it is important to have these professionals be part of the feeding team to ensure the necessary decisions can be made in a timely manner.
Recent studies have found up to 50% of children who are tube dependant to be severely malnourished, a worrying result. Although poorly scattered there are highly qualified specialists available for the task of tube weaning and a variety of treatment options, including online where the child can be weaned successfully and safely at home.
Speaking as physician to physician, my priority is to ask for medical professionals to listen to parent’s concerns in all difficulties around enteral nutrition and consider tube weaning as a solution sooner rather than later, to hopefully avoid the pitfalls of tube dependence.