How to select a tube weaning program

7 reasons to free your child

8 reasons parents continue to tube feed their children

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This article is the first 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.

As with most things in life, there can be benefits and drawbacks to tube feeding, and learning as much as possible about these can help empower you as parents to feel involved and confident in decisions about your child’s treatment.

Any medical treatment should go through a process of informed consent, where you are made aware of the advantages and disadvantages of the treatment and are able to understand all possible outcomes.

boy with a feeding tubeMost feeding tubes are fitted in children who are too young to understand the process. It may be possible to explain some of the process to a toddler or an older child. In order to truly consent to a procedure, a person must be able to fully understand the explanation of the treatment, any possible risks, and the consequences of not having any treatment; it takes intelligence and emotional maturity to consent.

In a lot of cases children start off with a nasogastric (NG) tube. This has the advantage of being less invasive but needs changing on a regular basis. It can cause irritation to the nose and throat and requires taping to the face; something that can be uncomfortable as well as being highly visible. An NG tube should really be viewed as a temporary measure, either because the period of treatment is for a very short duration, or as a trial to assess the effectiveness of tube feeding.

Gastrostomy and jejunostomy tubes will require a general anaesthetic and the risks associated with that. Depending on the underlying condition and any other procedures being performed at the same time this may be performed via an endoscope or through more open surgery.

Children adapt to tube feeding in a variety of ways. We find that the earlier in life they have a tube the better they adapt to it, however it also depends on the child’s development, personality, support and general health.

Being involved in the decision to tube feed your child is highly stressful for parents. The idea of not being able to feed one’s own child can feel shameful, depressing and intimidating.

In the event of a planned tube placement you may seek information from professionals, friends, and online forums. Some of these can be excellent sources of information, others may offer a highly biased view based on their own experiences and opinions.

Family with their child with a feeding tubeThe idea of any invasive procedure happening to your child is frightening. It can seem intrusive and imposes a heavy burden of responsibility on you as parents. In most cases you should have a good relationship with your medical team and have been made fully aware of the reasons for starting tube feeding.

In the case of illnesses requiring permanent tube feeding, such as severe neuromuscular illnesses or metabolic disorders requiring a highly specific nutrient intake, the decision to place a tube may come as a relief.

If you are considering starting tube feeding for a temporary period, perhaps to build your child up prior to surgery or due to prematurity, it is extremely important to seek clearly defined goals from the medical team in charge of your child regarding the intended time frame of tube feeding. These goals will be defined by medical, nutritional or growth related aspects.

Many medical professionals rely on tube feeding to provide essential nutritional support for their young and fragile patients during difficult times. The decision to start tube feeding is not taken lightly, and they consider the specific situation of each child, as well as their personal experience and medical guidelines. All the while bearing in mind that children are sensitive individuals and expectations based on published data and general medical texts may not apply to an individual child.

Mostly the decision to start tube feeding is based on the likelihood that without it the child will not survive. Undoubtedly tube feeding is essential and life-saving. But as medicine is often not a clear cut situation there may be a difference in opinion between specialists, therapists and nursing staff. This is why wherever possible, it is important to establish a joint consent from the whole medical team involved with the child before involving the parents, or they risk causing confusion, upset and loss of confidence in the medical team.

It is also essential to ensure that there is a team in place specializing in support and care of tube fed children, who can optimize the treatment and manage all nutritional, developmental and growth monitoring and changes to feeding regimens. They need to have good support for the family and access to a variety of programs for ending tube feeding.

From every perspective the decision to start tube feeding is highly significant. Our key message is to make sure you are fully informed, that there is consensus that this is the best treatment option and be sure there are plans and targets in place for cessation of tube feeding.

Marguerite Dunitz-Scheer