Awareness: Fired Up About NutritionMonday, February 5thShare information about why you or your child is tube fed. There are hundreds of medical conditions that can lead to tube feeding – most of which you can’t see. Most people do not understand why someone, particularly children, can’t eat enough to grow, thrive and live. Help educate people about the medical conditions that can lead to tube feeding.
Did you know that there are literally hundreds of medical conditions that can lead to tube feeding? The Feeding Tube Awareness Foundation has identified at least 340. It can be difficult to understand why someone who looks healthy on the outside could need a feeding tube. Many of these medical conditions are "invisible," meaning there may not be any obvious outward signs of medical problems.
One thing that I want people to understand about tube feeding is that every family's story is unique and individual. It's important to remember that if you've met one person with a feeding tube, you've met one person with a feeding tube. There may be similarities, but there will also be a lot of differences. Some children will need their tubes for the rest of their lives due to their diagnoses, and others will wean off of their tubes. The majority of children who are tube fed DO wean off of their tubes.
Our story started with a healthy, full-term baby who had reflux just like her older sisters. At first, we didn't think there was anything more to it than just reflux that happened to be a bit worse than the other girls' had been. Before long, it was pretty clear that there was something more to it than that. Despite everything we tried and everything her doctor tried, Raya just needed the support of a feeding tube in order to sustain adequate growth and nutrition for healthy brain development. A lot of testing, trial and error, and "waiting it out" later, Raya was diagnosed with several medical conditions. The primary reasons for her tube feeding are GERD, multiple food allergies, gastroparesis, and visceral hyperalgesia. Another important factor is that when she was a tiny infant, she learned that food hurt. When food hurts, children learn to avoid it. She has mostly overcome a severe oral aversion but still struggles at times with trying new foods, or foods that have certain textures or flavors. We've spent literally years working with feeding therapists. She started working with her first feeding therapist when she was only about 5 months old, so she has been in feeding therapy almost her entire life. Feeding therapists work with children to help develop oral motor skills, overcome oral aversions and sensory challenges, and help children work through all of the things that make eating difficult. I have often felt like feeding therapy was as important and possibly even more important for me than for Raya because without being taught the techniques our therapists have used with her, I wouldn't have been able to maintain consistency with Raya at home to help her continue making progress outside of therapy.
Although there have been times in Raya's life when she's been 100% dependent on the tube for all of her nutrition, fluids, and medications, this is currently not the case and it has not been for quite a while. Ever since Raya was about 2, she has taken in varying amounts of food and water by mouth. One thing that makes it difficult to predict how long she might need her feeding tube is the fact that she has chronic medical conditions that occasionally "flare up" and make eating painful and difficult again, which leads to Raya eating less. Over the summer last year, we had a high heat wave here and a couple other things happened, and the combination of those things triggered a flare-up of her gastroparesis. It was the first time in a couple years that she'd had a problem with that and it was disheartening, but we worked closely with her GI doctor to treat her symptoms and she recovered quickly. Since then, she has made steady progress with eating by mouth and is currently eating 1/3 or more of her calories by mouth. It is so exciting to see her advance toward our ultimate goal of weaning her off of the feeding tube! We have no idea when that will happen and we understand that it could still be a matter of years due to her medical conditions, but we do believe she will get off of her tube when her body is ready and that is what we continue to work towards.