Keen to Wean?

Two experts share their advice on making the transition from tube-feeding to oral eating.

Between the collective caseloads of dietitian Ashleigh Mitchell, the director of Nourish Paediatrics, and Paediatric Feeding International’s Dr Tessa Taylor, hundreds of children and their families have been supported off their feeding tubes. How, you ask? Here, they answer.

When is it time for a child to wean off their feeding tube?

Ashleigh Mitchell: Deciding if and when to wean is very individual and needs a multidisciplinary approach – which could involve doctors, speech pathologists, physiotherapists, occupational therapists, psychologists and dietitians. Weaning requires consideration of the child’s medical condition, their ability to eat and swallow safely, their growth, nutrition and hydration, along with their overall wellbeing and motivation. It also has to be the right time for their support network.

Tessa Taylor: First, a child must be cleared for swallowing safety to eat or drink orally, or to learn the skills they need to successfully participate in a swallow study. They also need medical stability and clearance – which might include testing for food allergies, or an endoscopy – and treatments for medical or physical factors. After that, the earlier and younger, the better.

What does tube-weaning usually look like and how long does it tend to take?

TT: Tube-weaning needs to be individualised for the child and family – and I’ve found substantial progress in eating and drinking skills can be achieved quickly, in a matter of days.

My program sees tube-feeds reduced gradually as the child succeeds, without relying on hunger. Mealtime skills like using utensils, cup drinking, and chewing are taught. Food texture and independence in taking medication are increased. A wide variety of healthy foods from all food groups are used and, after we figure out what the child needs to be successful, we can also practise meals away from home, in places like cafes and daycare.

AM: There are lots of ways to wean. After discussion with a child’s multidisciplinary team, I consider their nutritional needs, eating ability, food preferences, family routine and goals. We then aim to provoke appetite by reducing a proportion of tube-feeds. Food is offered first and the feeding tube may be used as a ‘top up’ providing what hasn’t been eaten.

I work with families to ensure the foods being offered to their child are nutritious and high in energy and protein, give them a plan for balancing tube-feeds with food intake, and monitor their nutrition status. As for the timeline… how long is a piece of string? We reduce tube-feeds gradually as oral intake increases. There are so many factors involved, so it varies widely.

What are some common challenges that can arise while tube-weaning?

AM: From a dietitian’s perspective, weight loss and a limited variety of food intake is common while tube-weaning. It takes time to learn to chew, swallow and eat – and becoming familiar with textures, flavours and smells can also be challenging. Ensuring mealtimes are positive – without pressure to eat – is very important. And regular monitoring of growth, blood tests and intake helps the child stay nourished during the process.

I like to set children up for weaning from the time the tube goes in. There’s a lot that can be done while tube-feeding to maintain the connection between feelings of fullness and learn about the sensory and social experience of eating. A child will learn about the process of eating if they are sitting with others eating, for example, at the table, a picnic or daycare.

We may administer the feed from a pump placed behind the child while they play with a spoon or, if it’s safe for them to swallow, they may do messy play with food. The aim is to de-medicalise tube-feeding and socialise at meals.

TT: Initially, when oral eating and drinking skills are very new to the child, balancing how long it takes them to eat their meals with the amount of food and drink they need to have is critical.

Similarly, factors in meals such as texture, solid-to-liquid ratio and volume must be carefully analysed and individualised for the child if vomiting is a concern. Medical setbacks, like illnesses, surgeries or uncertainties that may be impacting meals, can also be a challenge.

Is this something people and families tend to get right on the first go – or can it take several attempts?

TT: Yes, they can get it right the first time around – especially with younger ages and medical stability. However, children may need a second go to reach the goal of chewing full, regular- texture meals.

AM: Think of it like learning a new skill. Sometimes you pick it up straight away and other times it takes trial and error. I try to encourage families to celebrate small steps towards eating rather than focusing on the end goal which, for some, may be tube removal.

What tube-weaning success story has really stuck with you?

AM: There are a lot of children and families that have stuck with me over the years. I have known some from birth and early childhood until they are taller than me and transitioning to adult services.

I had the pleasure of seeing a few have large medical breakthroughs leading to rapid tube-weaning, seeing children go from eating almost nothing to feeding- tube removal. The joy the families had when sharing this news is something I will never forget. Reflecting on these journeys is making me emotional right now!

TT: What’s most touching is seeing so many ‘firsts’ – not only during the tube- weaning program, but in updates from the families after. With all the complexity and hard work that goes into it, it’s so rewarding to finally see a child learn to take their first independent bite with a spoon, first chew, and experience so many different foods for the first time. A first for me recently was teaching a child to use chopsticks!

Families also report so many benefits beyond eating, like getting haircuts or allowing toothbrushing, or improved self- confidence. All this after being told their child ‘can’t’ or ‘isn’t ready’. Thankfully, parents don’t have to do this alone or wait. Effective support is available.