Tube Feeding – Let’s start the conversation 

The focus of this blog is to begin the conversation around Tube Feeding, as it has affected and continues to affect a large number of children. 

Tube feeding is often presented to whānau as a last resort with the impression that they have failed (Failure to Thrive). When in fact, tube feeding is lifesaving and should never be portrayed to the caregivers as a failure option. 

There are 3 main types of tube feeding:

  • Nasogastric tube feeding – carries food to the stomach via a tube entered at the nose 
  • Nasojejunal tube feeding – carries food to the small bowel via a tube entered at the nose 
  • Percutaneous Endoscopic Gastrostomy (PEG) or G-Tubes – allows for food to enter directly to the stomach (externally)

Why would a tube be interested in the first place? 

A child’s medical team opt for a feeding tube for a number of reasons, beginning from a medical concern or complication. A child may be unable to safely feed on milk (breast or bottle) or safely consume solid foods due to concerns of choking, aspirating, or swallowing complications. There may be gastrointestinal or other internal organ complications making eating or drinking unsafe. Or the child may be perceived as Failure to Thrive, not gaining weight, losing weight, or not accepting breast, bottle, or solids. 

Evidence suggests that a feeding tube should be in place for a maximum of 4-6 weeks while management and investigation of the medical complication or reason for nil by mouth are explored. Unfortunately, feeding tubes are often in place for a lot longer, sometimes for years leading to a range of additional complications. 

Tube Weaning

The process of tube weaning is a complex one, becoming more challenging the longer the tube is in place. Children with a feeding tube or who have previously had a feeding tube often experience significant oral aversions, fears of anything going in and around their mouth, and certainly food restrictions. Feeding tubes involve invasion of a child’s sensitive mouth and nose areas, causing negative associations with their mouth and pain. The longer a child has a feeding tube, increases the association of pain and additional complications as a result. There is always a significant trauma for the caregivers and the child, no matter how long or complicated their journey is. And unfortunately, there is often very little support available for caregivers to comprehend what they have experienced. 

Tube weaning is a complex process with the goal of weaning a child off the supports of their tube to being completely or predominately orally fed. A tube wean requires a large team of trained professionals including paediatricians, dieticians, occupational therapists, speech pathologists, and mental health supports. Many factors must be addressed prior to a tube wean including stable medical condition with no planned future medical intervention, child’s readiness and interest in food, caregiver readiness, home supports to assist with setting up the environment, available food, and extended whānau support including cultural considerations, mental health supports, and community support. 

Tube feeding is a vital intervention that is lifesaving for many children and should be perceived as lifesaving, not as a failure. Being a part of the Clinical Network for Paediatric Tube Feeding, we are advocating, and working with the ministry to create funding avenues for tube weans to occur.

Tube weans are vital which is why we are working hard to ensure everyone who needs it can access a tube weaning service. It is important to acknowledge that for some people, their journey may not result in being able to tube wean due to ongoing complications preventing nil by mouth.

Image retrieved from feedingtubeawareness.com

Rebecca Barnard