7 critical concerns when considering tube weaning

7 critical concerns when considering tube weaning

How to select a tube weaning program

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From the many reasons to hate the feeding tube. And how it is still possible to come to terms with it.

“Any idiot can face a crisis. It’s day to day living that wears you out”

Anton Chekhov


At the beginning it was a wonderful child. And of course we know that there is no right to a life without pain. But it seems that the doctors just don’t stop examining this wonderful child. At least, not until they find something. The rest was unutterable pain. If there is something that is more difficult to bear than being sick yourself, then it is having a sick child.


As if that isn’t enough, then something else barges its way into the family: the feeding tube. It is supposed to feed this wonderful child immediately. And because you can’t suffer any more, because the opposite is true and it is fair to see this new, equipment-intensive situation in a negative light, and because it totally deserves it, you start to hate the feeding tube.


  • Because suddenly there are cables and pegs that make it impossible to see the wonderful child behind them.
  • Because there is now a hole in this wonderful child that wasn’t there previously and which definitely doesn’t belong there
  • Because the feeding tube itself demands so much attention, almost like a second horrible child
  • Because you are so terribly dependent on it, around the clock
  • Because you aren’t allowed to be affronted by it
  • Because if you are and do something about it, then life is immediately placed at risk
  • Because it can be affronted by any little thing
  • Because you have to trust it
  • Because everything, absolutely everything, revolves around it
  • Because it makes you feel neurotic and paranoid, although you never wanted to be that way
  • Because you often fight for hours to make sure that the child is getting enough food
  • And it still gets vomited back up
  • Because it isolates you and makes you incredibly tired
  • Because it can put you in embarrassing situations and so you stay at home
  • Because, regardless of your expectations as a parent, you at least thought that you would be able to feed your child yourself. But it takes that away from you
  • Because it represents the feeling of having failed (even when you tell yourself a hundred times that it isn’t true)
  • Because it makes the wonderful child look completely healthy. If it wasn’t for the…..
  • Because it saves the life of this wonderful child. Every day.


LipidHPN (1)If you only feel a couple of these reasons deep within you, then you should congratulate yourself. These strong feelings about a couple of grams of plastic show nothing other than optimism, the unshakable belief that something more is deserved. Now would be a good moment to speak these feelings aloud. And thereby begin to change the relationship with the feeding tube forever.


Of course there is no right to a life without pain. How you deal with the pain is up to you. And so – you have time – things become routine. Cheerfulness. Strong nerves. Adaptation. Everyday life. The more used you are to dealing with the feeding tube, the fewer thoughts about the technicalities, and maybe the tolerance towards it increases and the fear reduces.


Or it starts with you seeing the child behind the feeding tube again; its developmental progress. Then you also see how much the child profits from this sworn enemy. You see the developments that – let’s be honest – are not possible without the tube. Acceptance mixes with the cocktail of emotions and you can openly approve of everything the piece of plastic does.


Maybe you even catch yourself feeling thankful about, for example, how easy it makes giving medication and you are reminded how dangerous the smallest infection can be. Before. Or you see other positive aspects, like how it saves the life of the bravest of all children each and every day. This is everyday life.


And then, and this is the big difference, something like a “plan” works its way into this peaceful coexistence. And this plan has a priority list, with the wish for the child and family to be free of the tube at the top. A new perspective emerges. Actively aspiring to be free from the previously accepted necessity takes the place of the daily getting by. The optimism cloaked in strong feelings is justified; the previously hated, disfiguring, over controlling, much cursed, etc, feeding tube finally gets a new attribute – temporary, medically no longer necessary, removable….. Now, at last, there is a reason to love the tube.

And then it is gone.

Christof Huemer