Day 3

Didn’t get weighed today.

We went to meet the professor at 9am. It’s a holiday here but she wanted to see how we were doing. She got some food out and told mommy or daddy to try feed me. I had about 7 spoons!

We had a long chat. She said that in Austria no children are allowed home with ng tubes anymore. She said it’s a SHORT-TERM solution. Unless the child can’t swallow their saliva, or has poor lung function, there is no reason why they can’t eat. She said that temporary gastrostomy tubes can be used instead, but even then there is a plan as to when the tube will come out. She said there should’ve been a clear plan for me, ie when I would come off the tube. Not this ‘waiting to see what happens’ business. She said too many doctors are happy to put the tube in, that’s their job done, they’re feeding etc. But no-one wants to take responsibility for getting the child off the tube. Thing is.. like I said before, tube feeding can be an addiction. That’s why some children come off them, and others don’t – just like some people can enjoy some wine, without being an alcoholic. She has been researching this for 15 years. She said that it is totally wrong. The doctors, dieticians all having control over how much the parents give their tube fed children. The parents lose control, and so do the children. Often children are over-fed. A lot of children who are sick when they are on ng tubes are just really full up. That all stops when they eat properly and can control whether they want more or not.

Mommy was a bit confused as to when to give me food, since they’re not really allowed to offer it. She said mommy must read my signs. If I open my mouth and look hungry mommy must quickly put some in my mouth on a spoon. I need to get a taste for it, once I realise that it makes me feel better… I’ll want more and more.

I’m not feeling so good. I’m grumpy and crying a lot. The prof said that I could be getting headaches and all sorts of things. But it’ll go and soon I’ll start to feel better.

I think mommy’s a bit angry about it all. She was talking to another lady about the time the ng tube was first inserted. They weren’t told what may happen. That their children may not want to eat orally, for a very long time. There is not much help/guidance. It seems no-one wants to take control, take responsibility. The parents are discharged and they learn how to tube feed. But then what… then it becomes a battle with therapy and with feeding. The longer the tube’s in, the harder it can be to get it out. It’s too ‘easy’ to feed by tube, too ‘easy’ to recommend a gastrostomy. No-one seems to tackle the all important question of why are we still being tube fed. The parents are doing everything ‘right’. How much more can they do? It seems this Austrian therapy works, it’s called ‘controlled starvation’, but so far I haven’t totally starved. I’ve had bits… I guess other kids don’t. But it works, children are coming in tube fed, and are leaving happy and are feeding like any other child. A lot of them no longer vomit. I know more and more children are coming from the UK and I hope that the UK invites the prof to teach them, to show them the mistakes that they are making. A doctor at Great Ormond Street is already showing great interest. It all makes a lot of sense.

Mommy remembers ages ago being concerned with the volumes I was receiving. She didn’t know how much I’d want, surely i should just eat when I’m hungry like everyone else? Why should i get a set amount every day, no child does! But mommy was told to do it, that’s how it’s done. She accepted it, and those questions fell by the way-side. 15 months later I’m in Austria being weaned off a tube that was put in me at birth, without any clear plan as to when it would come out. That is wrong. The reason it’s wrong is because most children who come to the clinic leave eating. The therapy in the UK can go on for years. It doesn’t work… something’s wrong there… surely? Food aversions. Children come to the clinic with such major food aversions they can’t bear to touch food. They leave eating. It may seem a drastic solution, but if children were weaned off the tubes when they are much younger (when they’re meant to), there wouldn’t be the need for such a drastic solution. None of the children are traumatised by this. They are learning about food and the pleasures it can bring. They suffer for a short period to get to that point, but the suffering we’ve all gone through for however long, having a tube shoved down our nose, the back of our throats into our stomach is NOTHING in comparison. A week of feeling groggy, compared to 15 months of tubes. I’d take the week any day.