What is it and why does it happen?

One of the lesser known (and obviously less frequent) consequences of severe gastroesophageal reflux disease (GORD) is the need to tube feed some children. Babies can learn very quickly that the act of feeding hurts and as a result will refuse to feed. Despite the notion that feeding should be instinctual, there are some instincts that take precedence, like preserving oxygen flow or avoiding pain. If stomach contents are being aspirated or are threatening to be aspirated into the lungs it can cause a child to instinctively protect their airways by pulling off the breast or bottle (often pulling their head sharply to the left to cut off the airways). Add pain into the mix and children will sometimes refuse to feed to the point where tube feeding is required. If your child is a feed refuser, tube feeding is not always the answer. Read our strategies and options for feed refusers.

What is tube feeding?

Tube feeding is where a small tube is passed either through the nose, down the oesophegus into the stomach called a nasal-gastric tube Charlotte on a nasal gastric tube(NGT) or by gastric feeding where a small button is surgically placed through the abdominal wall directly into the stomach that will either permanently or periodically be attached to a tube through which feeds can be given. This is called a Percutaneous Endoscopic Gastrostomy (PEG). Ordinarily, a child will begin with a NGT until it becomes clear that tube feeding may be a longer term requirement, at which point a gastric tube will be considered. While the gastric tube sounds horrible, it does have advantages in that tape is not permanently affixed to the child’s face which is uncomfortable, inevitably irritates the skin and requires regular changing. Also, a gastric tube means that there’s no NGT running down the back of the child’s throat which can irritate and interfere with a child’s desire to eat – which is counter-productive in a child who is already feed averse.

A less common version of tube feeding is jejunal feeding known as a nasal jejunal tube (NJT) or gastrostomy & jejunostomyjejunal tube (JT). This is where the tube is passed down either through the nose or through the abdominal wall the same way as above but the tube continues through the stomach to the second part of the intestine known as the jejunum. This means the tube has to pass through the pyloric sphincter and the deodenum (first part of the bowel) and feeds directly into the small intestine. It requires very delicate placement under x-ray usually and feeds must be given at a far slower rate due to the intestine not functioning as a receptacle in the same way the stomach can.

How is a decision to commence tube feeding made?

Essentially, there are a couple of factors at play but as with all of these things, each case is different and your child’s specialists will make the decision based on best serving the needs of your particular child’s circumstances.

If the decision is being made on weight gain alone, it would generally be made where a considerable weight drop is demonstrated (over a few percentile bands) and where the child is not showing signs of being able to maintain their weight. Also, where a child’s weight is dangerously low to the point where they can’t maintain wet nappies or bowel movements or they appear to be fairly unresponsive and chronically malnourished.

A decision can also be made to tube feed where the airways are being significantly compromised by aspiration of stomach contents or an ineffective swallow that causes the child’s breathing to be critically (and often chronically) compromised. (These are obviously the reflux-related reasons for tube-feeding. There are, of course, other medical reasons for tube feeding.)

Why doctors don’t rush to tube feed

While the decision to put in a tube to feed a child is not one that any parent takes lightly, it can seem like the only solution to dealing with a child who is chronically feeding averse. The problem is that once a tube goes in, these children can fairly quickly become tube dependent. They are relieved by not having to feed and frequently the small level of feeding skills they already possess will be lost quite quickly. They will come to quickly rely on being fed by tube and be relieved at not having to go through the trauma of feeding so often or for as long.

This doesn’t happen with all children. Some children cope quite well with a tube, the tube is used to supplement their reasonable feeding skills and over a few months, the child is able to be weaned from the tube and resume a more normal feeding pattern.

What are the advantages of tube feeding?

It takes the fight away. Parents no longer need to battle their child at every meal (which can seem like all day, every day) and can concentrate on allowing them to play with food, experience new textures and sensations secure in the knowledge that if they actually don’t swallow anything, there’s another way of keeping them going. Surprisingly, it can be quite a relief for parents as well when a tube is placed. This will only seem like a normal response to those who have experienced it perhaps, but having fought your own child to feed continually just to keep them alive, having that pressure removed can be an immense relief.

Also, it allows you to concentrate on improving their feeding skills without the pressure of needing to get them to feed. They can chew on non-food items (like a rubber toothbrush) to experience a different texture without it needing to be associated with food – a good first step when needing to reintroduce a spoon for a child who’s scared of one.

Opinions to seek and options to explore before going down the tube feeding path

You may also wish to have your child assessed for a few other things that may be interfering with their desire to eat if time allows and commencing tube feeding is not strictly urgent. These include:

  • lip or tongue ties (ABA page on lip & tongue ties)
  • speech therapy assessment for swallow dysfunction
  • allergy assessment by an immunologist – dairy, soy, gluten and other allergies and intolerances can cause gut pain and exacerbate feed refusal
  • laryngomalacia particularly if stridor is present
  • occupational therapy or speech therapy to assist with techniques in helping a child to feed
  • lactation consultant to assess attachment and suck
  • Ear Nose and Throat (ENT) specialist to assess whether enlarged tonsils, adenoids or other related ENT issues could be a causal factor
  • Sleep specialist to assess whether there are any other causal factors at play (other than reflux) for disturbed sleep.

Conversations to consider before a tube is placed

Ask your medical team for a plan for the duration and removal of the tube:

  • What are the circumstances under which the tube will be removed?
  • What additional tests will be conducted to determine the cause of the child’s feeding aversion?
  • When or has your child been assessed for:
    • abnormal swallow
    • abnormal gastric emptying
    • lip or tongue ties
    • constipation
    • neurological issues
    • food allergy or intolerance issues (or non-food related allergies)
    • other physiologial causes eg hiatus hernia

Of course it is difficult for physicians to give you definite timeframes – they’re trying to find the answers too – but health systems are big and you don’t want your child getting lost in one because you assume people are thinking through the broad range of possible causes when they’re not. There are many variables for different children but it isn’t OK to place a tube with no plan to work towards removal unless there is evidence that it will be a long term requirement.

Remember: you are your child’s voice. You have to be your child’s advocate. If you are not a RISA member and you are on the cusp of tube feeding, we cannot recommend highly enough that you join. It will give you access to other parents who have been through this and can help you be the best advocate you can for your child.

Part 2 to this article coming soon and will deal with managing a child on a feeding tube.

Author: Joanne Matthews, RISA President.

Reviewed: Bianca Willis, BScience (Biomedical & Psychology), RISA Secretary

Last reviewed: March 2014

Back to March ’14 Newsletter