By: Jennifer Berry, MS, OT/L and Heidi Moreland, MS, CCC-SLP, BCS-S, CLC
Many parents of children with feeding tubes wonder how soon they can begin the tube weaning process. Even when parents believe their children are showing signs of interest or readiness, their medical teams often advise them to wait. The doctors’ belief is that the tube is “working” and that weaning will happen on its own when kids get bigger, often years down the road. We agree that feeding tubes can be lifesavers for kids that need them, but keeping a feeding tube in a child longer than needed is a very bad idea because there are critical windows of time that we don’t want to miss. As those windows close, parents and professionals find that teaching tube-fed kids to eat gets increasingly more difficult. This is backed up by some of the research about learning to eat and factors associated with successful tube-weaning. Here is what we know:
Feeding skills are harder to learn later. Medical and developmental literature describes windows of critical development for learning. Typically, kids learn spoon feeding of purees at 4-6 months of age, solid foods at 8-15 months, and the refinement of those skills by 2-3 years of age. These are referred to as “critical periods” because that is when the brain is developmentally poised and motivated to learn those skills. Although the brain is always able to learn new skills, waiting past that time can make it considerably more difficult and delay other skill acquisition that relies on this critical development. Making kids wait to work on these skills is likely to make the development of those skills more difficult.
Self-regulation is harder to learn later. Self-regulation is important for the development of a healthy relationship with food, which has long-term health implications. Poor self-regulation in early childhood is correlated with increased risk of disease later in life. The importance for tube-fed children is that studies show self-regulation of eating becomes more fragile with age. Infants and toddlers naturally self-regulate their intake based on energy needs, but by the age of pre-school are more susceptible to outside influence. Because of the impact of tube-feeding on the development of autonomy and self-regulation, the longer tube dependency goes on, the greater the impact on the child’s self-regulation skills.
The stress on parents and families only gets worse. Negative interactions between parents and children around mealtimes will continue to occur as long as the tube is in place. Those interactions can have an adverse impact on the parent-child bond, which can have far-reaching consequences, including attachment, independence and self-esteem.
If tubes are needed permanently or long-term, there are things that can be done to minimize the effect the tube can have on self-regulation, well-being and the parent-child bond. However, the risks of waiting make the establishment of self-regulation through independent eating a treatment priority that shouldn’t be missed.
For more information about how to wean your child from their feeding tube email thrive@spectrumpediatrics or call 703-299-0051 today.
Franklin, Lyndal, and Sylvia Rodger. “Parents’ perspectives on feeding medically compromised children: Implications for occupational therapy.”Australian Occupational Therapy Journal 50.3 (2003): 137-147.
Ishizaki, A., Hironaka, S., Tatsuno, M., & Mukai, Y. (2013). Characteristics of and weaning strategies in tube‐dependent children. Pediatrics International, 55(2), 208-213.
Krom, H., de Winter, J. P., & Kindermann, A. (2017). Development, prevention, and treatment of feeding tube dependency. European journal of pediatrics, 176(6), 683-688.
Mason SJ, Harris G, Blissett J (2005) Tube feeding in infancy: Implications for the development of normal eating and drinking skills. Dysphagia 20: 46-61
Wright, C. M., Smith, K. H., & Morrison, J. (2011). Withdrawing feeds from children on long term enteral feeding: factors associated with success and failure. Archives of disease in childhood, 96(5), 433-439.