Children with medical challenges (e.g., prematurity, cardiac, respiratory, neurological, gastrointestinal, swallowing), and/or severe feeding aversion may require tube feedings to support their growth and nutrition. There are many reasons why children have difficulty with feeding. While some children will outgrow the need for a feeding tube, others will have a feeding tube for their lifetime. As a Feeding Therapist, I seek to support parents and caregivers of children that are tube-fed regardless of their unique experience. It is important to recognize that what may work for one child and family, may not work for another.
Tube feedings are intended to partially or fully replace calories from oral feedings and may be recommended to enhance weight gain or improve the nutritional status of a child who aspirates (food or liquid enters airway/lungs) or does not have the endurance to meet nutritional needs via oral feedings.
In my experience, feeding tubes are often viewed as the enemy of feeding progress and parents feel as though they have failed if their child requires a feeding tube. There is often a strong focus on getting the child “off the tube” and orally feeding as quickly as possible. As a Speech-Language Pathologist with specific focus on pediatric feeding and swallowing, I work at both ends of the tube feeding spectrum. Sometimes I am working with a child’s family and medical team to suggest and recommend a feeding tube placement to support growth and feeding development and other times I am working with a child’s family and team to wean and discontinue tube feedings.
Understandably, the parent response to the decision to place a feeding tube is often a very emotional one. Caregivers may feel defeated and overwhelmed. Feeding their child with a tube was not what they had envisioned and the decision can impact parents' mental health. Parents often have to quickly adopt the role of medical provider and learn about new terminology and equipment. Mealtimes become a procedure.
Caregivers express a range of feelings ranging from relief to guilt, fear, failure, and grief. Some of the families I work with express acceptance and relief, as the tube finally offers an opportunity for their child to be well-nourished. Other families feel very discouraged and fear that the tube feeding will be required forever. They also fear that their child will be viewed as “different” from others. Even if there is medical evidence that the child’s feeding issues are not related to parenting…these caregivers still feel that they have “failed” because they were unable to successfully feed and nourish their child.
Parents also express fear that the tube will replace oral feedings and their child will forget how to eat. In most cases, children are able to maintain some level of oral feeding while tube feeding. When a child requires tube feedings to allow them to grow and feed safely, I try to help families to make peace with the tube…to view the tube as a friend…not the enemy. I counsel parents that the goal is to, “Allow your child to grow well while preserving the feeding relationship and learning to enjoy eating.”
Tube feeding does not typically need to completely replace oral feeding, it offers a support while a child is learning to eat. When a child receives a feeding tube, families are able to reduce pressure for the child to eat. In some cases, desperate families have resorted to force feeding and lengthy and stressful meals with their child. Once the feeding tube has been placed, this pattern can be discontinued and the child is able to participate in more positive mealtime experiences. In time, parents express less anxiety that their child is not taking in enough calories and they are able to begin to relax, exhale, and enjoy mealtimes with their child. As forcing and pressure are reduced, the child learns to trust the caregiver, which in turn places them on a path toward learning to eat successfully.
Start early – if possible, as soon as tube feeding starts!
Pre-Feeding Skills (Therapy Skill Builders): Dunn-Klein and Evans-Morris, 2000
Evaluation and Treatment of Pediatric Feeding Disorders from NICU toChildhood (ProEd): Fraker and Walbert, 2003
Food Chaining The Proven 6-Step Plan to Stop Picky Eating, Solve Feeding Problems, and Expand Your Child's Diet: Fraker, Fishbein, Cox, and Walbert, 2007
Pre-Feeding Skills, Second Edition: (Therapy Skill Builders): Suzanne Evans Morris and Marsha Dunn Klein, 2000.
Feeding and Nutrition for the Child with Special Needs (Therapy Skill Builders): Marsha Dunn Klein and Tracey A. Delaney, 1994.
Marsha Dunn-Klein Get Permission Approach: https://www.getpermissionapproach.com/
Marsha Dunn-Klein: Tube Feeding Information: https://www.getpermissionapproach.com/tube-feeding
Susan Evans-Morris: http://www.new-vis.com/fym/papers/p-feed12.htm
Kids With Tubes: ww.kidswithtubes.org
Kids Health: https://kidshealth.org/en/parents/g-tube.html
About Kids Health: https://www.aboutkidshealth.ca/article?contentid=2822&language=english
Feeding Tube Awareness: https://www.feedingtubeawareness.org
Canadian Pediatric Society: https://www.cps.ca/en/documents/position/gastrostomy-tube-feeding
A Look at Blended Tube Meals – Part 1: http://depts.washington.edu/nutrfoc/webapps/?p=1050
A Look at Blended Tube Meals – Part 2: http://depts.washington.edu/nutrfoc/webapps/?p=1048