Family Diaries: Meet Margaret and Iwan
This article shares Margaret and Iwan’s experience of tube feeding under their individual care plan given by a healthcare professional. Please don’t change a care plan without speaking to a dietitian. All views expressed belong to Margaret and Iwan, and do not necessarily reflect those of Nestlé Health Science.
Iwan, 25-year-old son
Was Iwan tube fed from birth?
No, he wasn't. He really enjoyed his food when he was younger. He was a good eater with food that had been blended though it could take a long time to feed him. He knew the flavours - there was one particular brand of juice he liked and he wouldn't accept any others – so it was a limited diet. We'd have to make the meals and puree them before we went anywhere.
His swallow study was fine, and I didn't want to give up feeding him orally, but he had really bad chest infections and that made it difficult. He started to lose interest in eating and there was some pressure from the school paediatrician and nurse around his feeding because he was losing weight. Then it was decided that he should have a feeding tube. He was then tube fed from when he was about 14.
What kind of feeding tube does he have?
He had a nasogastric (NG) tube at first because although his swallow was fine, he wasn’t eating or drinking enough particularly when he was ill. I found it quite traumatic trying to keep the NG tube in and change the tape on his cheek. When it got dislodged, or when we couldn’t aspirate anything from it, we’d have to take him into hospital.
When he was 13, they inserted a percutaneous endoscopic gastrostomy (PEG). He then had a balloon gastrostomy button for years until they started to fail. When he was 19, it was changed to a non-balloon tube which is secured better and changed annually. That's the best solution for him.
Were there any difficulties when he first had his gastrostomy?
He had some over-granulation but nothing major. It's been really clean, no leakages. The only problem was that the tube of the PEG started to perish after a year. There wasn't a follow-up date to change it; we had to have an emergency admission to change it to a button (with a balloon). I wasn't aware that it would fail that quickly, and there wasn't any plan in place which felt odd.
What do you feed Iwan through his tube?
He has a prescription, multi-fibre feed. It goes through the feeding pump throughout the day – starting at around 8am and going until about 6pm, with hourly water boluses. It used to be longer but it’s a more concentrated feed now.
Iwan suffers a lot from reflux, chest infections and aspiration pneumonias. He can only tolerate 60ml per hour at the most so it's safest through the pump where we can set the speed and the volume. If he's having seizures or we are travelling, we can reduce the speed of the feed which is good.
Have you had good support from health professionals?
The dietetic team are really good. Iwan’s reflux got really bad during lockdown, and I was able to discuss the problems on the phone to come up with a plan. I was really happy they listened and were able to work with us to make things better for Iwan. I have found a difference in adult services – Iwan transitioned to adult services when he was 18 years old. It feels more like co-working with professionals which suits us better. When he was seen by paediatric services it felt less inclusive.
How do you feel about the tube feeding now?
We're used to it now. It's part of Iwan and it’s normal for us. We just hook the pump and feed on the back of the wheelchair if we go out and it does make managing the day easier. We've got a good team behind us, so I don't feel we're managing alone.
I find the tube really useful for giving medication. When Iwan was having medication orally it used to come back up and then you've got no idea if some stayed down. With the tube, you know he’s had everything.
I really regret not being able to give him blended food. I think things are changing now but at the time that his tube was put in, it was nearly a safeguarding issue if parents persisted with blended food in the tube. I should have pushed more but they were saying it would block the tube and cause infections on the site. I'd jump at the chance of giving him real food again, if we had the right support. He's got a dietetics appointment coming up so it's probably something I can raise with them.
What advice would you give to a parent who is new to tube feeding?
I think be clear about why it's happening and find out if your child can be tube fed and orally fed. To be honest, I still don't fully understand the decision to give Iwan a tube and I wish I had understood more at the time.
Our local health policy says that we're not allowed to replace the tube ourselves. It has to be done by a health professional, so be clear about what to do if the tube comes out. We took Iwan to A&E when his button came out and they had no idea. It should have been treated as emergency, but it wasn’t and it was over the weekend. On the Monday morning, we phoned his team and they sorted him out. Policies are very different in different areas. Also, it can be really scary if the tube blocks, so make sure you know what to do.
Parents should be able to make an informed choice about what their child is fed, no matter what their age. I didn’t feel like we were given the choice at all. Now Iwan is an adult, the discussions are more honest, open and involved. It suits me better than paediatric services. Tube feeding is normal for us now.