To PEG or not to PEG?

PEG

PEG stands for Percutaneous Endoscopic Gastrostomy. PEGs are also called G-tubes. A PEG is put in place through routine surgery, and means that instead of a tube going across your child’s face, up the nose, and down towards the stomach like an NG tube, it goes directly through the abdominal wall into the stomach.

A PEG is not always an option. There are some reasons why it might not be appropriate (your clinician might refer to these as contraindications). If an NG tube is expected to be short-term, then a PEG is not normally considered. But if the tube-feeding will take longer, then a PEG might be a possibility.

[Note: we want a picture of a PEG and NG here with labels showing which is which]

If your doctor asks whether you’d like to go ahead with a PEG, it might be helpful to hear what these parents had to say to help you make your decision. Many parents put off switching to a PEG but once it is done, wish they had done it sooner. Others never go for a PEG and are happy with their decision.

There is no right answer – it will be a no-brainer for some families, a definite no-no for others, and something in between for lots more! We aren’t suggesting PEGs are always the right way to go, but we do think it’s beneficial to share what other parents think now they are further down the track.

Some of the Real Stories are from families who chose to go with a PEG.

Nicole: Long-term NGT worked for us
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He was tube fed for two and half years – just NG because, I dunno, we didn’t go down the PEG route, which I now think was a good decision.

Kati: A PEG doesn’t mean forever
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The doctor said, maybe we should look at a peg. At first I was like, no, no peg, because that’s – you know, shit, once it goes into a peg – excuse my language – that’s long term. So you’re panicking, oh my god, that’s long term, what does that mean? So you’re in panic mode, and I had to get my head around it. But having had it done, I wouldn’t change it, it’s better.

You can read Kati’s full story in the Real Stories section.

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Hannah: A PEG can be life-changing

[Video Transcript:]
That freedom has been amazing. Life has changed, because obviously family vacations have to be planned or not planned or put on hold. Things like that. Now, swimming is fine. I guess that’s the purpose of it, to be able to have the opportunities for all those regular activities. Look, it is still a stress. There’s still a maintenance to it, and it popped out a few weeks ago for the first time ever. I’d been trained and put it back in, but at the moment I just couldn’t remember a thing! I just looked and said to myself ‘I was told it would happen’

We feed Christian now out.  I actually find it a bit easier with the PEG feeding him out because – yes it’s gravity, but because it’s so direct and so quick it’s got a stopper on it.  So, it’s start stop, start stop – it’s the same sort of thing feeding over 20, 30 minutes, but because you can have it down low and the start stop is there.  So, I can then tuck it to the pram and it wouldn’t even know it’s there.  He’s got his t-shirt over.  He’s yapping away, or he’s now holding a bottle, and then just chomping on whatever toy. But it’s freed up his face to be able to do that whereas we couldn’t do that before.

You can read Hannah’s full story in the Real Stories section.

Veroniki: A PEG is less visible
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People can’t see the peg, so you don’t have people staring at you all the time.

Morgan: A PEG can’t be pulled out – fewer visits to the hospital
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We had to go to hospital every time she pulled the NG out, two or three times in a day sometimes! Once the PEG is in, it’s in.

Bec: A PEG might make things more comfortable for your child
[Audio]
He had a lot of eczema on his face, so he would scratch a lot. Before that, he used to pull out the tube quite a lot and every three days or so, I would have to change the tube side because of his eczema, it was that bad. Now he doesn’t have eczema on his face, his face has cleared up 100 per cent. Because he was allergic to the tape, and I tried many different tapes. Yeah, so his skin used to bubble up and everything, so I had to constantly clean it to make sure it doesn’t get infected and so on. Also with the NG tube, he was getting sick all the time, especially bronchiolitis. I think part of that was because of the tube. I did speak to the team as well and they do agree, that because you’re constantly pulling in and out and doing things in that area, he was always getting sick.

Lisa also thought the PEG helped her child get less sick and reduced vomiting  (see also: Tips and Ticks – ask questions)

However, it’s worth remembering also that a PEG can make it less comfortable for a child to be on their tummy, particularly at first.

Priya: A PEG can remove obstacles to your child’s development and social life
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Now that I know about pegs, I think a year with an NG is too long. I feel that we somehow delayed his development because we were worried about the NG so much and you’re fussing. Obviously for him it’s better, because there’s nothing stuck down your throat, in your face, getting sick all the time. You’re free, go do whatever you want, and he’s rolling, he’s doing what he wants now. Whereas before you’ve got him contained. Especially when there’s other kids, he didn’t have the opportunity to mingle with other kids because you’re worried they’re going to pull it out. That’s what they do, the first thing they do is go to that.

Tagrid: A PEG can free you up to go and do more things
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We’re doing a lot more stuff. I’m not worried, he can pull it out, who cares. Well, not pull it out, sorry – I’m not worried, he can’t pull it out, so we’re more free. Whereas even though you could put the nasogastric tube through the nose, if you’re out and he pulls it, you’ve got to go somewhere clean to put it in, and then wash the one that came out, all those things. Whereas now I don’t have to worry about any of that.

Hannah: A PEG can help you worry less about your child rolling while asleep
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If they start rolling, you’re panicking. Shit! The tube! The tube! It’s this long thing that’s sticking out. Imagine them rolling. It’s going everywhere. When they’re sleeping you worry it’s going to go around their neck. He’s done it before where he’s put it around his neck from rolling.

Isabel: A child can still fiddle with a PEG, so you need to manage that
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Now I make sure he wears onesies, so then he can’t get to his tube. Before he used to be in T-shirts, now I’ve just changed all his clothes into onesies, the short sleeves and if it’s winter he’ll go into a full one. But that’s what he’s wearing, so then he can’t pull it, so then I’m not worried.

Erica: A PEG can make going out easier, but feeding can still take need some thought
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After we discovered the PEG, well, it’s brilliant, it’s like everything is covered. He can go out with a normal look. Now when I try to feed him, we either go to the parent room, or the toilet. I feed him there. Otherwise, he can start to have a little bit normal life. A normal life, taking him out and let him start to social with other people.

Read more about Erica and her son Hamish in their Real Story.

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