By: Jamie Hinchey, MS, CCC-SLP

This week’s episode is talking about weight. Why is it such a stressful topic? How can you handle conversations about weight? What else should we be looking at? Throughout our tube weaning process, we receive so many questions about the role that weight plays in child receiving a tube, preparing to wean, or while weaning. Weight is a topic that causes stress for families of children with feeding tubes, children with general feeding difficulties, or children who have had a complicated medical history. In this week’s episode, Heidi and Jennifer are unraveling what we know about weight and its importance on feeding and growth from the medical literature, as well as from their clinical experience. This episode discusses how weight becomes the main focus when looking at a child’s wellness and what other wellness parameters are being looked over. Heidi and Jennifer also dive into growth charts and what they really mean, how to start conversations with your medical team about your child’s weight, and the importance of starting this conversation during your feeding journey. 

You can download this episode from ItunesStitcher, Spotify, Google Play, or listen to it below:

How did we get here? 

“Weight carries a lot of weight.” – Weight has become such a huge focus for children with tubes, whether they are receiving the tube or working on weaning away from the feeding tube. Growth charts were initially intended to identify if there is a problem with growth and dive into how that problem can be addressed. They were initially meant to be an alert to look further into something, rather than an indicator or a diagnostic tool. When appropriately using a growth chart on the individual level, growth charts are used to look at growth and assess how a child is gaining weight. If a child is not gaining weight, then this would alert professionals to look further into WHY they aren’t gaining weight and identify what could be going on. This is a helpful resource discussing why a failure to thrive diagnosis is an indicator to look further, rather than a syndrome. 

The number is SO concrete!

Weight is one of the only indicators of health we can measure in small babies, therefore it is a very important measure as a baby grows. What happens is that as children age, there are other indicators of health that should be included with weight. It is important to look at weight, but important to not put too much focus and ask your medical team about other wellness parameters. Weight easily becomes a way to measure “how well” your child is doing because it is a tangible number, but it is important to look at development, diapers, energy, and mood. Often times, physicians find themselves in a dilemma because although they are trained in growth charts and the medical side of weight gain, they are not trained in all of the tools to know how to help a family in a situation where the child is “not gaining weight”. It is common for families to be told “he is not gaining weight”, but they are not given a resource or advice on how to fix this. For tube fed families, many physicians have shared with us that on the “feeding” side of training, whether it is responsive feeding, or general development, there is very little education in medical school for physicians.  

In their own bubble!

When a child receives a feeding tube, they are often grouped into a “bubble” where they are held to a completely different standard when looking at what their weight gain should be. When the feeding tube is placed, weight gain is expected to be fast, often much faster than what is developmentally appropriate. There is the mentality of “let’s get the most out of it” and that more supplementation and more weight gain is better. The problem is that this is not ALWAYS better. Children are supposed to grow on a curve that is steady and comfortable for them, rather than trying to speed up growth. This can often complicate the weaning process and put’s children at risk for worsening their relationship with food.  

It is important to note that many special populations do have their own growth charts because there are conditions where growth would be different than expected or compared to same-age peers. Here is a growth chart for children with Down Syndrome. Children who are born with an extremely low birth weight have a different growth trajectory, which doesn’t mean it is “lower”, but it may look different. Your medical team should be willing and committed to looking at those factors and discussing what may make your child’s growth different than another child.  

What to do? 

Weight can be an emotional topic, especially for children who were born with an extremely low birth weight, or who had a medically complicated background. After a child is in a medically stable place, it is important to stop looking at predetermined numbers and prescriptions through the tube and focus on what your child is telling you. This includes looking at their behavior, their response to feedings, and how they are reacting to food or getting tube fed. Keep in mind what you would do with another child and how you would respond if the problem was not arising solely from the feeding tube.  

This can be a scary topic to talk about because we know that emotions and attachment for parents are so intricately tied to eating. It can be hard to see a child lose weight. Thrive by Spectrum Pediatrics is not suggesting that weight is not important, it is! A child should not fall off their growth curve drastically, but it is important to put it in perspective with sleep, developmental milestones, and engagement.  

Fed is best!

If the tube is necessary, that is important. Feeding tubes save lives, and help many children with their growth and development. While feeding tubes are important and a child should be fed in the most appropriate way for them, you should also consider other factors. It is important to know that you are doing your best to provide your child with appropriate nutrition, but there is a time to switch the mindset as your child continues to progress.  

You got this! 

It is important to advocate for your child, which can be done in a compassionate and understanding why. Keep in mind that your medical team may not have all the information they need, but that does not mean they are not willing to. As part of our Tube Weaning evaluation and process, our role is to help families speak with physicians and review all the different factors. Nobody knows everything and those conversations are necessary to help your child move forward and start their tube weaning journey! 

Here are some helpful resources:

Grummer-Strawn, L., Krebs, N. F., & Reinold, C. M. (2009). Use of World Health Organization and CDC growth charts for children aged 0-59 months in the United States.     PDF available  

Saigal, S., Stoskopf, B. L., Streiner, D. L., & Burrows, E. (2001). Physical growth and current health status of infants who were of extremely low birth weight and controls at adolescence. Pediatrics108(2), 407-415. 

Saigal, S., Stoskopf, B., Streiner, D., Paneth, N., Pinelli, J., & Boyle, M. (2006). Growth trajectories of extremely low birth weight infants from birth to young adulthood: a longitudinal, population-based study. Pediatric Research60(6), 751. 

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