Tube feeding generally involves delivering a liquid feed through the nose (nasal tube) or stomach (gastrostomy tube). Tube feeding helps your child to meet their nutritional needs when they are not able to eat or drink enough by mouth.
Key points to remember about tube feeding
- tube feeding helps your child to meet their nutritional needs when they are not able to eat or drink enough by mouth
- tube feeding may be used if your child can't safely swallow liquids, foods, or medications
- it is possible for you and others to learn how to use the feeding tube safely at home
- it is difficult to say how long your child will need a feeding tube - many children are able to stop tube feeding when it is no longer medically required
- prolonged tube feeding refers to tube feeding for longer than 3 months
- tube feeding will not limit your child's ability to participate in the community or in physical activities
- a range of professionals may be helping your child
What is tube feeding?
Tube feeding generally involves delivering a liquid feed through the nose (nasal tube) or stomach (gastrostomy tube). Feed types include expressed breast milk, infant formula or a specialised liquid feed.
There are 2 types of nasal tubes - nasogastric (NG) tubes and nasojejunum (NJ) tubes.
Nasogastric or NG tubes
A soft polyurethane tube is put into your child's nose, and runs down your child's food canal (oesophagus) to their stomach. This type of nasal tube is called a nasogastric or NG tube.
Nasojejunum or NJ tubes
In some cases, the tube may avoid the stomach and end in a part of the intestine. This type of nasal tube is called a nasojejunum or NJ tube. Your child may need an NJ tube if they cannot tolerate feeding to the stomach.
Will my child need an operation to have a nasal tube put in?
Your child will not need an operation - nasal tubes are usually put in by a nurse. Nasal tube feeding is a temporary way of feeding.
A few things to keep in mind about nasal tubes
- you will need to tape the nasal tube to your child's cheek - this may irritate them
- your child may pull the tube out, but you can be taught how to replace the tube at home by your medical professional. The tube will also need to be changed regularly
- you may see increased reflux, gagging, or refusal to eat by mouth
- the nasal tube may be replaced by a gastrostomy tube if your child needs longer term tube feeding
A gastrostomy tube goes directly into your child's stomach from the skin of your child's tummy. The tube may be put in during an operation, or by a procedure called endoscopy. Endoscopy is a way of looking inside the body using a flexible tube with a small camera on the end of it. The endoscope is put in through your child's mouth and down the food canal (oesophagus), which leads to the stomach. There will be a recovery period for a few days after the gastrostomy tube goes in.
Types of gastrostomy tubes
Your child's health professional will discuss the best type of tube with you. Types of gastrostomy tubes include retention disk PEG, PEG-J, balloon gastrostomy or MicKey button.
A few things to keep in mind about gastrostomy tubes
- gastrostomy tubes are a safer and more comfortable long-term option
- you may be able to replace some tubes at home (for example, balloon gastrostomy or MicKey button) following training with your community or hospital nurse
- tubes generally need to be replaced every 6 months for balloon inflated gastrostomy and MicKey tubes and between 2-5 years for retention disk PEG and PEG-J tubes - tubes may need to be replaced sooner if there is any deterioration of the tube or it is not working properly
- during the healing process, red, bubbly tissue (granulation tissue) may form around the skin where the tube goes in - this is not dangerous and can be treated by your doctor or with ointment
- gastrostomy tubes may become blocked if food or some medications are put down the tube - ask your health professional before putting unprescribed foods or medications down the tube
- if your gastrostomy tube becomes blocked then you can try to unblock it with extra water flushes and/or contact your healthcare professional
Your child’s dietitian and feeding team will give you a feeding plan for your child. This will include times and type of feed. The type of feeding plan will depend on your child's medical condition and how much feed they can handle. Specialised liquid feeds are only available on prescription from your dietitian, family doctor, or paediatrician. Feeding can be given in either of the following ways:
- bolus feeds - larger amounts of liquid feed given at set times over the day so that it's like meal times
- small amounts given continuously by a feeding pump
Who may be involved?
There will be a range of professionals supporting you and your child with tube feeding. These professionals may also help your child begin to change to feeding by mouth (oral feeding). Your child needs this range of professionals (called a multidisciplinary team) because of the different factors that contribute to feeding. The professionals can include:
- family doctors (GPs)
- children's community nurses
- speech language therapists
- occupational therapists
How will tube feeding affect my child and our family?
Tube feeding takes some adjustment, but many families report relief at seeing that their child is getting the nutrition, liquid (hydration) or medications that they need. With the help of your health professionals, you will be able to learn to use the feeding tube safely at home. If safe, your child will still be able to eat by mouth (orally) while they have a feeding tube.
Your child will still be able to take part in physical activities (such as swimming, bike riding) and go to daycare or school. People who care for your child will also be able to learn to use the feeding tube.
It can be helpful to have some prepared responses to questions people in the community may ask about the tube (what it is for, why it is there, etc).
You may find it emotionally overwhelming if your child is on long-term tube feeding. It will be helpful to seek support from your feeding team, other professionals, or parents. You can ask your health professionals if there are support groups in your area. There are also links at the bottom of this page to New Zealand and international support networks.
How long will my child need to be tube fed?
Your child will need to tube feed until they are able to eat or drink enough by mouth (orally) to meet their nutritional needs. Some children will have medical conditions that mean they may always need some degree of tube feeding.
To be ready for feeding by mouth (oral feeding), your child will need to show that they can swallow safely and are otherwise medically stable.
From tube feeding to feeding by mouth
It is helpful to plan for feeding by mouth (orally) with your health professionals as early as possible. You may start to include 'mealtime' experiences into your child's tube feeding routine, such as:
- giving tube feeds in a food context (for example, for a younger child cuddled up with you; for older children at a small table with finger food or in a highchair with the family at dinner time)
- encouraging tube feeding to be done by other people and at other places (for example, by grandparents in their kitchen), just like children who are fed by mouth and who eat with different people and in different places
- involving your child in mealtime preparation and other food experiences (such as birthday parties, visits to cafes and restaurants)
- encouraging your child to explore food through their other senses such as touch, smell, vision
- considering changing from a nasal tube to a gastrostomy tube early to minimise discomfort to the mouth and face caused by nasal tubes
Approaches for tube weaning/changing to feeding by mouth
Seek guidance regularly from your health professionals about when your child may be ready to change from tube feeding to feeding by mouth (oral feeding).
If your child is ready, your health professionals may recommend a plan for weaning your child from tube feeding. This plan will depend on your child's medical condition, nutritional status (for example, their height and weight on growth charts), oral motor skills (for example, chewing), anxiety and behaviour, as well as the services available in your area. At the minimum, your paediatrician/doctor, dietitian, and speech language therapist will be involved.
While there are many different treatment approaches, your child's plan may involve some of these common elements:
- medical monitoring and oversight by your doctor or paediatrician
- nutritional monitoring and oversight: your child's dietitian will regularly assess your child's growth, how much feed they are having, and help you with choosing nutritional foods to introduce
- hunger manipulation: your child's tube feeds may be decreased by your dietitian, or scheduled differently so that your child is more likely to feel hunger at mealtimes when they will be fed by mouth (oral mealtimes)
- oral motor and sensory techniques: your speech and language therapist can help with improving skills such as drinking from a cup and using a spoon, and introducing new tastes or textures to your child
- behavioural techniques: your psychologist or other medical professional may help you learn strategies to increase structure and routine in meals, introduce new tastes or textures, decrease mealtime problem behaviours, and reward desired behaviours