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Hello. My name is Krista and I’m the mom of a wonderful little boy named Eli. Eli was born at 24 weeks gestation and was tube fed most of the first year of his life. The doctors here in the US couldn’t tell us why Eli wouldn’t eat, or why he would projectile vomit several times a day.
Eli had been receiving feeding therapy, but he wasn’t really progressing in his desire or skill to eat. As he approached 1 year of age, I began to notice that he had some sensory issues too. Sometimes just touching food would make him gag and vomit. Even dry pasta. As I began to research tube weaning I came across research that discussed how tube dependency can contribute to developmental delays and sensory issues (Kamen, 1990; Rommel, De Meyer, Feenstra, & Veereman-Wauters, 2003). The research also said that as children wean they often catch up developmentally and pretty quickly. This is exactly what we saw with Eli.
From a developmental perspective, eating is an integral part of sensory and motor development. It is also a social activity. Several times a day children sit to eat. They learn how to manipulate small and large pieces of food and get them to their mouth. This helps with gross and fine motor skills. They touch food of all different textures with their hands, and mouth, and often it ends up on their face and other body parts too! Children also interact with their caregivers during this time, learning the names of what they are eating, and engaging in play or communication.
Children that are tube fed and do not eat orally miss out on those opportunities to work on those skills while eating, potentially delaying their motor, socio-emotional and language development.
Some children, like my son, are overfed when tube fed. This can make moving around their environment very uncomfortable. Any pressure on the stomach from rolling, sitting too long, or bending over to crawl can cause vomiting. So they avoid moving which can delay motor development. Tube feeding is stressful on the parent too, and that stress can impact the parent-child relationship. On top of that stress, I must admit it is quite difficult to positively engage with your child when you are running tubes, checking residuals, calculating volumes, loading the machine, or trying to force a syringe through a tough spot and hoping it doesn’t explode in your face. Everything about tube feeding has the potential to negatively impact normal child development.
Don’t get me wrong, I am grateful that Eli was able to be tube fed when it was needed. It definitely saved his life when he couldn’t eat. But by the time Eli was one, his underlying medical issues had resolved and we knew it was time to get rid of the feeding tube; we just didn’t know how to do it. We sought the help of NoTube and through their netcoaching program began to wean Eli off of his feeding tube. NoTube was the only program that we found that provided us with the medical supervision to wean from home. Once we started Eli’s wean we immediately noticed change in his developmental trajectory. Eli started opening his mouth more and smiling, putting things in his mouth (including food!) and moving around.
Just a few short weeks after being weaned Eli began to crawl and cruise along the furniture. He became less sensitive to touching foods and even enjoys finger paints (a big vomit-inducing trigger before the wean). The movement that once used to make him sick, he now loved. He gets the biggest smile on his face now when he is thrown into the air. If you had done that to him when he was tube fed you were almost guaranteed a milk shower. So many things that he struggled with when he was tube fed were worries of the past. We didn’t just get rid of the feeding tube; we helped take back control of our child’s development.
He was ready to do all of those things; we just had to give him the opportunity to feel well enough to do them! Being tube free also lifted an enormous weight off of our shoulders. We felt free to just be Eli’s parents and to enjoy him. Our interactions with Eli were different now, they were positive. We were no longer his nurses. We didn’t have to track volumes and weigh him and catch vomit. We finally had the opportunity to just enjoy our child and play with him. We finally became Eli’s parents when the tube left our lives. We have the NoTube team to thank for that. They are truly the tube weaning experts.
Kamen, R. S. (1990). Impaired Development of Oral-Motor Functions Required for Normal Oral Feeding as a Consequence of Tube Feeding during Infancy Impaired Development of Oral-Motor Functions Required for Normal Oral Feeding as a Consequence of Tube Feeding during Infancy.
Rommel, N., De Meyer, A. M., Feenstra, L., & Veereman-Wauters, G. (2003). The complexity of feeding problems in 700 infants and young children presenting to a tertiary care institution. Journal of pediatric gastroenterology and nutrition, 37(1), 75-84.