Tube Feeding and Learning to Eat: Part 1 - Answering Parent Questions

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.

Parent Question: When should I start working on oral feeding with my tube-fed child?

Start early – if possible, as soon as tube feeding starts!

• When babies and children have been had medical issues and have been unable to orally feed, sometimes their mouth gets forgotten and they do not receive mouth stimulation. The mouth can become unfamiliar with touch and taste resulting in hypersensitivity.
• Additionally, these children have a history of negative oral experiences (e.g., vomiting, breathing support, tube changes, suctioning, etc.). Opportunities for early mouthing experiences may help to reduce the risk of oral hypersensitivity and/or food refusal in the future.

Parent Question: What can I do with my baby that is tube fed?

• Treat tube feedings as a mealtime, not a procedure. If your baby was breast or bottle feeding you would likely be holding him/her during feedings. Snuggle and hold your baby and cuddle during tube feedings, as you would during oral feedings. This will provide a positive experience for your baby and an opportunity to connect.
• Try skin-to-skin contact (kangaroo care) with your baby during tube feeding time.
• Play music during tube feedings to reduce stress and support physical and mental relaxation.
• Aim to engage your baby in positive sensory input during tube feeding times (e.g., touch, eye contact, touch on face/lips, kisses).
• As tolerated and when you child is calm and comfortable, introduce loving, gentle mouthing activities.
• If your baby is unable to bring her hands to her mouth, you can use your clean finger or gently guide your little one’s hands toward her mouth while cuddling.
• If your baby cannot bottle-feed, use a pacifier or mouth toys to develop oral skills
  Pacifiers and mouthing activities are encouraged during tube feedings to teach your child about the association between his/her mouth and gut. Some studies have demonstrated that the use of pacifiers results in better GI transit time, an increase in fat breakdown, better weight gain, and a faster transition to oral feedings.

Parent Question: What can I do with my toddler/older child that is tube fed?

• Expose your child to a typical mealtime routine (e.g., bolus feeds every 3-4 hours).
• Encourage sensory exploration of foods (e.g., touching, smelling foods).
• Provide opportunities to learn about food through cooking and food play activities.
• Follow developmentally appropriate stages of feeding (e.g., purees, mashed, soft cubes of foods).
• Your child can participate in family meals while receiving tube feedings. Children learn to eat by watching others. Your child can choose foods to put on his/her plate and participate in the meal even if they are not ready to eat the food just yet.  He/she will learn about food by touching, smelling, and looking.
• Try to talk about other things than eating during mealtimes. Reduce pressure to “try” foods.
• Vary the location of tube feedings…as oral feeders we enjoy eating in different places with a variety of people. Give a tube feeding during a picnic or at a relative’s house.
• Encourage other caregivers to administer the tube feeding so the responsibility is shared.

Parent Question: What if my child is not safe to eat by mouth?

• If your child is NPO (nothing by mouth) offer daily oral stimulation, mouth care, and toothbrushing as tolerated. Always follow your child's cues and don't force. Encourage your child to explore different textures mouth toys and brushes.
• Children who are not able to safely eat by mouth sometimes enjoy a smelling program.
• Some children that are not safe to eat by mouth are able to safely tolerate small "tastes" of food (if medically approved) while being closely monitoring by a Speech-Language Pathologist/OT/Feeding Therapist.

Parent Question: Can I put “real” food in my child’s tube instead of commercial formula?

• Many families are able to successfully tube feed their child using Homemade Blended Formula (HBF). HBF is specially prepared food for the child who receives nutrition by tube. It can be a combination of purees and commercial formula or a mixture of pureed food specifically prepared to meet a child’s nutritional needs.
• Many parents that I work with report positive results with HBF including improved GI function and interest in oral feeding. They also report that they enjoy the experience of preparing and feeding their child with “real” or “family” foods by tube, as they are able to show their love through meal preparation and offer their child nutritional variety.
• A child receiving tube feedings requires support and monitoring from a physician and Registered Dietician (RD) with expertise in homemade blended diets. HBF is not an option for all children with feeding tubes but for those who are interested, it could be discussed with their child’s health care team.

Stay tuned for Part 2 of this blog series next week where I will address the parent question, "When and how will my child wean off of tube feedings?" 

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References/Resources:

Books

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.

Websites

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

SickKids: http://www.sickkids.ca/IGT/About-Us/What-we-do/G-Tube-Program/index.html

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