The answer to this question, is unfortunately not a one size fits all approach. Feeding difficulties are multifaceted and complex in nature. Children may require supplemental or alternative feeding for a variety of different reasons. A paediatric feeding disorder is defined as: “impaired oral intake that is not age appropriate, and is associated with medical, nutritional, feeding skill, and/or psychosocial dysfunction.” (Goday, et al. 2019).

So, children who require tube feeding, often require tube feeding for different reasons – in some instances they may require the feeding tube their whole lives, in other instances tube feeding may be temporary and in other instances, children can receive both tube feeding and oral feeds. This is something that is important to discuss with your entire medical team (which may include a paediatrician, stoma sister, paediatric surgeon, speech therapist, dietitian, occupational therapist, etc.).

Children may wean off their feeding tubes if they are no longer medically necessary and the child is gaining weight sufficiently with optimal skills required for safe and efficient oral intake. If a child has been declared safe to eat or drink orally with certain textures by the medical team, it should be encouraged, however it is important to note that there may be limitations in terms of the amounts, time, and types of foods/consistencies/textures. Children who aspirate should not eat/drink orally unless they have been guided by medical professionals. Oral eating might also change over time – the child might progress (for example if medical conditions are resolved and they acquire sufficient oral eating skills) or they might regress (for example with progressive or degenerative disorders where they lose the ability to eat orally).

Despite the medical, nutrition and growth challenges, some children who are tube fed already present with or develop oral aversions. It is recommended that you work closely with the doctors and therapists in your team to determine whether oral tasters or dual feeds or tube weaning is recommended for your child or to determine when the right time to do so is (if ever). If this is recommended, it is important to work with your team of healthcare professionals to overcome aversions, form positive relationships and associations with foods and to develop the oral sensory and motor skills necessary for eating and drinking.

Author: Leanne Hyams, ST from Thrive Therapy Services