Feeding tubes are placed for many reasons. The most common reason is when a physical or mental health concern, nutritional concern, and/or problem with feeding skills makes it hard for children to get the nutrition they need to grow and develop. Some children may also need a feeding tube for hydration or to get special types of formula or medication.
While some children use feeding tubes for life, others can safely stop using them and learn to eat and drink by mouth.
Tube weaning is the process of safely transitioning from tube feeding to eating and drinking by mouth. The tube weaning process involves a specialized treatment plan that takes time and careful planning by a health-care team.
Feeding tubes help many children get the nutrition, hydration and medications they need to thrive. However, some children still use their tubes even after the initial reason for needing a tube has resolved. This is called tube dependence. There are several reasons why children may become tube dependent, such as:
- oral aversions (not wanting or being afraid to eat by mouth)
- nausea, gagging or retching
- lack of hunger and/or thirst
- sensory issues (being sensitive to textures or flavours, making oral feeding difficult)
- feeding behaviour challenges
With the help of an interdisciplinary team, many tube-fed children can overcome these problems and learn to eat fully or partially by mouth through the process of tube weaning.
Each child should receive an individualized tube weaning plan that safely reduces nutrition through the feeding tube and teaches effective eating skills.
Benefits of tube weaning
For children who are ready to be weaned, tube weaning has many benefits. These may include:
- Improved quality of life: Transitioning off tube feeds can improve the quality of life for both your child and family. It helps children join mealtimes with loved ones and participate in social activities involving food, which can reduce the stigma of tube feeding.
- Enhanced oro-motor development: Oral feeding helps develop important oral motor skills needed for speech, chewing and swallowing. Many tube-fed children have speech challenges that improve with better oral intake.
- Increased independence: Learning to eat and drink by mouth helps children become more independent, boosting their confidence and self-esteem.
- Enhanced social interaction: Eating by mouth allows for engaging social interactions during meals, which is important for emotional and psychological well-being.
- Reduced risk of complications: Long-term use of feeding tubes can lead to complications like feed intolerance, nausea, vomiting, tube dislodgement, skin infections and irritation at the insertion site.
- Cost savings: Tube feeding can be expensive for families and the health-care system, including the cost of supplies, equipment and health-care visits. Weaning off the tube can reduce these costs.
Risks of tube weaning
The multidisciplinary team will closely monitor your child as they are being weaned off their tube to minimize any potential risks. If any of these problems arise, please contact to your child’s health-care team.
- Weight loss: Most children will experience weight loss during the tube weaning process. This can be very stressful for families who have worked hard to achieve a healthy weight. Your child’s health-care team will monitor their weight closely to ensure they remain safe.
- Dehydration: Reducing the amount of fluid that a child is taking puts them at risk for dehydration. The health-care team will calculate your child’s fluid needs and teach you how to monitor for dehydration. If you are concerned your child is dehydrated, please contact your child’s health-care provider.
- Constipation: Changes in the amount of fluid and types of food your child is eating may cause constipation.
- Aspiration: Aspiration happens when food, liquid or other material accidentally goes into the lungs instead of the stomach. A child who is learning to eat by mouth or trying new textures and/or liquids may be at risk for aspiration, especially if they have difficulties swallowing. Signs of aspiration include coughing, choking, wet breathing sounds and/or difficulty breathing. If you notice any of these signs, stop feeding your child by mouth and contact their health-care team.
- Blood sugar abnormalities: Reducing feeds too quickly in children who are prone to low blood sugars can be a risk for hypoglycemia. Talk to your child’s health-care team if your child has experienced this in the past.
Tube weaning can be frustrating, stressful and take a long time. Each child’s tube weaning journey is different. Tube weaning must be done with the support of a health-care team that can monitor for risks, address any problems and make appropriate changes to keep your child safe and healthy.
Tube weaning readiness
Several factors need to be assessed by a health-care team to determine if your child is ready for tube weaning. At SickKids, the tube weaning team will take a detailed history to ensure that there are no ongoing physical or mental health, nutritional or feeding skill needs for the feeding tube. The health-care team will also ask questions to see if your child and family are ready for the tube weaning process.
Not all children and families are ready for tube weaning and, in some cases, a feeding tube may be required for a longer time. If that is the case, tube weaning goals may shift to decreasing tube dependence or improving quality of life with the feeding tube.
Tips and tricks during tube weaning
Make mealtimes positive
- Your child’s readiness to start feeding by mouth is an exciting time. Help your child develop trust around food by making mealtimes positive.
- Allow your child freedom in feeding, let them accept or reject any food that goes into their mouth.
- NEVER FORCE FEED, force feeding can cause a feeding aversion.
- Limit mealtimes to a maximum of 30 minutes.
Feed based on hunger cues
- Your child’s interest in eating will vary throughout the day and from day to day. They may also need time to learn what hunger and fullness feel like, as tube feeds can interfere with this.
- Offer feeds when your child is showing hunger cues, interest in food, or asks. Ideally your child will cue for all feeds including those through the tube.
- Stop feeding when they are pushing food away, turning their head, crying, or showing cues that they are full.
- It is ok to stop and take a break during a tube feed if it is not being tolerated.
- Offer food by mouth before tube feeds, if possible.
Include your child in family mealtimes
- Eat with your child. Children learn from copying others.
- If your child can hold their head up and sit with minimal support, sit them in a highchair during family mealtimes (even if they are not taking anything by mouth).
- Run tube feeds during family mealtimes so your child is still included.
- Give your child a spoon or other food to hold at the same time as the tube feed to help them associate tube feeding with food and oral sensations.
Let your child try self-feeding
- Let your child feed themselves instead of feeding them from a spoon. This gives them a sense of control that they have not had with tube feeds.
- Let your child play with food by placing small amounts of purees or soft finger foods on their highchair tray. A child often explores their food before they start feeding themselves. It will be messy, but this is ok!
- Ask your occupational therapist (OT) for tips to help move your child from one food texture to another, for example from purees to soft pieces of cooked food.
Offer a range of foods
- Offer your child nutritious foods that are suitable for their stage of development.
- Offer a range of foods: salty, sweet, sour and spicy. Different flavours will spark your child’s interest in what they are eating.
Tube removal
Permanent tube removal is a decision made in collaboration with your child’s health-care team. If the time is right, your child’s health-care team may say it is safe to remove the feeding tube.
Depending on the type of tube that your child has, the process to remove the tube can be quite different. Your health-care team will guide you through what is needed to remove their tube.
The article "Deciding to permanently remove a feeding tube" has more information on some considerations for G, GJ and combination G/GJ permanent tube removal.
When to seek medical attention
Tube weaning is generally well tolerated. However, you should bring your tube weaning child to an emergency room if you notice any of the following signs:
- Severe dehydration: Signs include very dry mouth, no tears when crying, sunken eyes or significantly reduced urine output.
- Difficulty breathing: If your child is struggling to breathe, has rapid breathing or you hear abnormal sounds when they are breathing.
- Persistent vomiting: If your child is unable to keep any fluids down and is vomiting repeatedly.
- Lethargy or unresponsiveness: If your child is unusually sleepy, difficult to wake or unresponsive.
- Signs of aspiration: If your child is coughing, choking, has wet breathing sounds or difficulty breathing after eating or drinking.
- Persistent hypoglycemia: Hypoglycemia can come on quickly. Signs may include shaking, feeling cold and clammy, hunger along with nausea, fatigue, irritability/anxiety or, rarely, confusion, slurred speech, and/or seizures. If this occurs, call 911 immediately.
At SickKids
A referral by a physician or nurse practitioner is required for your child to be seen in the Tube Weaning Clinic at SickKids.
Children followed by the Tube Weaning Clinic at SickKids can reach out to the team with any non-urgent tube weaning related questions by emailing tube.weaning@sickkids.ca.
For more information about the clinic visit https://www.sickkids.ca/en/care-services/clinics/tube-weaning-clinic/
