Tube feeding

It is important to take good care of the feeding equipment so that it works well.

You can take care of feeding equipment by:

• washing in warm soapy water, rinsing well, air drying and storing in a clean container
• sterilising when using for babies under 6 months, not needed for babies over six months
• checking equipment daily for any damage or leakage
• replacing damaged parts when needed through EnableNSW or NDIS
• wiping pumps down with a damp cloth and removing any spilt formula or medication immediately
• keeping on top of the servicing and replacement schedule for your child's specific equipment.

If you are not sure, ask your child’s treatment team about cleaning, reusing and storing feeding equipment. 

Formulas can be liquid, or powders to mix with water.

Babies under 12 months of age will usually have expressed breast milk or infant formula, while children over 12 months of age will usually have only formula.

Some children may need special formula which is only available via prescription. A dietitian will prescribe special formula based on how your child is feeding and the equipment they are using.

Do not add anything to the formula or change the amount or type given without medical advice.

Storage

It is important to take care when preparing and storing formula, so it does not become contaminated.

Store formula properly by:

• making sure containers are covered, and stored in a cool, dry place
• rotating your formula as you buy new containers, making sure you use the oldest products first
• checking expiry dates on the packaging and throwing away any expired formula
• checking containers for breaks, dents, rust or damage and throwing away any damaged formula
• throwing away unused formula if it has been opened for longer than 4 weeks.

Preparation

Take care when preparing powdered formula by following these steps:

1. wash your hands thoroughly with soap
2. make sure your table or counter and equipment are clean to lower the risk of bacterial contamination
3. make sure bottles or containers are clean and sterilised and water has been boiled and cooled for children under 12 months old
4. measure cooled water into the bottle or container carefully
5. use the scoop from the formula tin to measure the powder
6. level off the powder in the scoop by scraping against lip on the inside of the tin, or with a knife
7. follow the number of formula scoops according to instructions from your child's treatment team and not the measurements on the package
8. add formula scoops to water in a bottle or container, tighten the lid and shake until powder is completely dissolved
9. store any formula that has been made in advance at the back of the refrigerator for up to 24 hours.

When preparing liquid formula:

1. check the expiry date on package and throw away if it is out of date
2. shake the bottle, can and wipe the top with a clean damp cloth before opening
3. cover and store in the fridge for up to 24 hours after opening.

If formula is left at room temperature for more than 2 hours, bacteria could grow and may make your child unwell. If you need to hang formula for more than 2 hours, speak to your health professional for advice.

Some children will be able to slowly transition to eating small amounts of food after tube feeding. Moving from tube feeds to oral feeding will depend on your child’s condition and how they are recovering.

Before transition to oral feeling, your child’s treatment team will need to consider:

• whether the health issue that needed tube feeding has resolved
• how your child’s general health and growth is going
• whether your child can swallow safely
• whether your child needs an assessment by a speech pathologist for swallowing
• whether your child has the oral skills needed to eat the amount of food needed to support nutrition
• whether your child is showing signs of hunger.

A feeding tube should stay in place until your child can consistently eat and drink enough food and fluid, even when unwell. Removing the tube too early may mean that it takes too long to eat, risking malnutrition and poor growth.

Oral stimulation activities get the mouth used to being used for eating again. They can increase the amount of saliva your child produces and help them to practice eating skills and should be given before introducing oral feeding. 

It is important to watch your child closely during these activities to make sure they can swallow and manage saliva safely. A speech pathologist should also assess your child’s ability to swallow, especially before any food or liquid is introduced.

Some activities your speech pathologist may suggest for your child include:

• offering positive touch experiences to the face and lips
• bringing hands and fingers to their mouth, between their lips and inside their lips
• using mouth toys like chews or bites
• swiping food on the lower lips and gum, followed by the tongue
• making associations between tube feeds and oral stimulation.

Some children will need a feeding tube as they are unable to swallow safely. Some children will find that they ability to swallow safely can improve as their oral feeding skills improve.

Your child will be watched closely to make sure they can swallow safely. A modified barium swallow study may be used to assess how their swallowing skills are developing.

Signs your child is having difficulty swallowing may include:

• coughing and/or gagging with eating
• vomiting while eating
• excessive drooling
• increased congestion
• a gurgled voice
• food refusal
• mealtimes lasting more than 30 minutes
• the feeling of food getting stuck behind breast bone
• drinking a lot of water between mouthfuls to wash food down.

Children transitioning to oral feeding may need to have modified food and fluids to make it easier or safer to swallow. Your child’s speech pathologist will be able to make recommendations for thickeners and equipment that can be used to help your child, including:

• teats and/or bottles
• cups
• utensils
• oral-facial stimulation materials
• seating systems.

Children who are transitioning from tube to oral feeds may need to increase their variety of food slower and more cautiously than other children. It is important to offer foods regularly as tastes change and develop.

If your child is placed on a modified diet, it is important to follow all instructions and recommendations closely.

Oral healthcare is important for all children, even if they are tube-fed. It is important to clean your child’s mouth at least twice a day for two minutes, including once before bed.

If you are concerned about managing teeth cleaning and swallowing, ask your dentist and/or speech pathologist about how to best clean your child’s teeth and mouth.

Book in regular check-ups every six months with your child’s dentist to help find any problems early.