Taking the Fear Out of Feeding Tubes,
One Tubie Friend at a Time

by Cristin Smock

Having a friend that is “just like me” can make all the difference to a child who lives with the medical challenges of having a feeding tube. A friend that provides comfort, love, snuggles, and joy during every facet of their day. This is what Tubie Friends™ is successfully doing for children throughout the United States and spreading throughout other countries.

tubiefriendTubie Friends™ adapts stuffed animals to have a real feeding tube placed into their stomach, intestines, or in through the nose depending on the style of feeding tube the child has. They do their best to match the animal friend’s medical apparatus to the recipient, providing familiarity and a feeling of acceptance. Not only do they make these realistic tube fed stuffed animals, but they are also adding such things as Trachs, Port-o-Caths (needle access kits), PICC lines, nasal cannulas and more. All feeding tube supplies have been generously donated by Kimberly-Clark, and fellow families who tube feed.

This non-profit organization was started by a group of moms whose children are currently using feeding tubes as their primary source of nutrition. As one stated, “We’ve seen what a comfort a Tubie Friend™ can be during a hospital stay, procedure or just when they need a friend.” Tubie Friends™ are donated to local hospitals, including Seattle Children’s Hospital, and clinics that deal with children and gastroenterology situations. They are also shipped to children throughout the world whose parents request one through their online application. In addition to bringing comfort to the child, these Tubie Friends™ can also be used as a teaching tool for family, friends and caregivers.

These wonderful friends are great visual aids and allow understanding through play therapy. “Tubie Friends has not only brought JOY into our home with the boys, but they are wonderful teaching tools as well. I was able to show my three- and five-year-old cousins how a feeding worked. How awesome to be able to satisfy the curiosity of a child, all while keeping your kids from feeling like they are on display!” said Kristine Simpkins, mother of twin 16-month-old boys who both have had feeding tubes since shortly after birth.

For a lot of these children, they may never encounter another individual with a feeding tube, resulting in feeling alone and different. Tubie Friends™ provides that level of sameness since they have a friend by their side through everything. They love on their Tubie Friends™, sleep with them, take them to their doctor’s appointments, dress them and play with them. Tubie Friends™ are also right by a child’s side through medical procedures, surgeries, and uncomfortable situations.

Five-year-old Olivia Dassaro underwent surgery to change her feeding tube to a different style on June 1, 2012. Olivia’s new Tubie Friend arrived just in the nick of time, on the morning of her procedure! When she went back into the room for the procedure, Olivia said she needed to have her Tubie Friend, Teddy, with her as a reference for the surgeon. She told him she needed the Tubie Friend in the room so, “You make sure you do it in the right spot!” The first thing she did when coming to from the anesthesia, was to grab her bear and look down at her tummy to make sure that her tube matched the bear’s! Olivia’s mom, Danielle Dassaro, sums it all up nicely. “This was the first time she did not wake up in a panic screaming and yelling and panicking to the point where it either throws her into a seizure and/or respiratory distress. She simply smiled (still quite loopy from the meds of course) and stayed calm the whole time. It goes to show a little comfort, love and faith, even in the form of a teddy bear, can go a long way.”

Behind the scenes of Tubie Friends™ is a team of dedicated volunteers who help raise awareness, funds and create the actual Tubie Friends. Many of the volunteers are parents who have children who are tube fed or are very close to someone who is tube fed. The volunteers, called Tubie Friends Surgeons, are currently in a variety of locations throughout the United States and have helped Tubie Friends™ to provide over 1500 Tubie Friends™ to children in their first year of operation!

Tubie Friends volunteers have put their hearts and souls into every stuffed animal that they have sent to hospitals or their new homes. They operate solely on donations and a volunteer basis only. Please help them continue to work towards their goal of getting a Tubie Friend into the hands of every child with a feeding tube throughout the world, and help spread awareness about tube feeding and Tubie Friends™.

For more information on how to get a Tubie Friend for your child or to make a monetary or medical supply donation, please visit www.tubiefriends.com, www.facebook.com/tubiefriends or email them at tubiefriends@gmail.com. All medical supplies have to be unused!

Author: Cristin Smock • Date: 1/14/2013

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