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What If Your Child Couldn’t Eat?
Three-year-old Lucas can't get enough nutrition by mouth, but he's doing great, thanks.
Mothering, at its very simplest, is about nourishing a child. Feeding a baby is a time for bonding, and the dinner table is the center of a family. In our culture, everything social revolves around food.
What if your child couldn’t eat?
February 5-11 is Feeding Tube Awareness Week this year, and we take you into the lives of eight moms whose children can’t get all the nutrition and hydration they need by mouth. These moms juggle school, daycare, work, cooking dinner, and driving to soccer, just like you. But they also manage feeding equipment that goes far beyond sippy cups.
Traci Nagy’s son Lucas spent the first two months of his life refluxing and aspirating. Reflux is when food or liquid bounces back up from the stomach into the esophagus; aspirating is when those foods or liquids are inhaled. At two months, with no clear diagnosis, he was given a feeding tube so that he could get enough nutrition and hydration to survive.
“I had the pump ready. I was going to breastfeed,” said Traci. “But he couldn’t latch on, and he was aspirating thin liquids. Everything surrounding food when he was first born was horrible. Everything you want when you think about initially bond with your child, that didn’t happen.”
“I think that a lot of moms get very, very depressed that they’re not able to feed their child in a “normal” way.”
“It’s a very different experience. You feel like a failure as a parent, because you’re not able to do something that is so central to parenting, and to mothering. It takes a little bit of time to reconcile your feelings, and realize, I am feeding my child, I’m just feeding him in a different way. You can still hold your child, give them a binky, and feed them.
“It’s not what you expected, and it’s not what you hoped for. But you have to move on.”
To be able to move on, Traci took several steps: “I had to give everything away, and get it out of my house,. You don’t want to see your ‘failed’ BPA-free bottles in your house.”
Traci also sought out other parents with similar situations. Even in the major metropolis of New York City, she had a hard time finding other parents to connect with. Eventually, she founded the Feeding Tube Awareness Foundation, which raises awareness and also helps connect parents across the globe. The foundation’s rapidly growing Facebook page is one of its most active components, with parents asking questions and exchanging ideas around the clock.
“It was filling a need, that wasn’t out there, and using social media to do it,” Traci said.
It’s difficult to know how many children have feeding tubes.
The "I heart a tubie" logo helps parents connect and spread awareness. (Image courtesy of The Feeding Tube Awareness Foundation.)
“Statistics don’t really exist,” said Traci. “There’s one study that says there were 188,000 placements in 2005, but 68 percent of those were in people 65 and older. It’s kind of an end-of-life or beginning-of-life thing.”
“There’s not a lot of research on this,” she said. “I don’t even have a good list of conditions that lead to pediatric tubes, but the variety is unreal. We also don’t have a good sense of how many tubes that get tubes each year, and how long they have them. My guess is that there’s easily 100,000 being tube fed each year, but I don’t have the data to prove it.”
Children with feeding tubes usually start with a nasograstric (NG) tube, which is inserted through the nose. The next step might be a gastric (G) tube, also called a “button.” That’s more like a port that goes directly to the stomach. Other options include J tubes, which go directly to the small intestine (jejunum) and G-J tubes, which place food directly into the stomach and the intestines.
Traci’s son Lucas is now a healthy three-and-a-half-year-old with a G feeding tube that delivers food directly to his stomach. He has gastroparesis, which means that food doesn’t move through his body the way it should. Unlike some people with gastroparesis, Lucas is able tolerate very tiny amounts of food, but not nearly enough for him to live on. Lucas also has some developmental delays, and is nonverbal.
Because the G-J tube is hidden under Lucas’ shirt, people are surprised to find out about Lucas’ unusual method of “eating.”
“But he looks so healthy,” is the refrain tube-feeding parents hear.
“My son looks healthy because the feeding tube is working,” said Traci. ”We probably have a few more years to go on the tube,” she added, noting that Lucas will have to learn how to chew, swallow, and accept different textures before he’ll be able to stop tube-feeding. He’ll also have to learn what it means to feel hungry, because currently he’s fed around the clock.
Lucas is growing, and so is the Feeding Tube Awareness Foundation.
“Our number one priority is to make people feel like they’re not alone,” said Traci.”Because they’re not. When you go online and see how many people there are, it’s astounding.”
An artistic member of the foundation created the iconic “tubie heart” logo.
“Parents see each other with the I heart a tubie logo, and they connect. It empowers people to say I love my child, and this is how they’re fed, and it doesn’t have to be a big deal. It makes it a game-changer to embrace it and own it.”
“It’s really parents that are changing things. Parents are designing and creating things that serve a medical need, but create excitement for the child and make things more kid-friendly.
One family has created a line of stuffed animals with feeding tubes, called Tubie Friends, which they donate to hospitals and other families across the country. Parents make fun, kid-friendly G-tube pads and sell them on Etsy and on blogs. One of the most popular brands of G-tube pads is My Button Buddies, which come in fun patterns and colors.
“Moms are all like MacGyver,” Traci said with a laugh. “Companies aren’t making what we need, so we improve on what we get.”
Take a peek inside the lives of eight moms with tube-fed kids:
Read more from Joslyn at her blog stark. raving. mad. mommy.
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11 Comments
Melissa commented on Feb 07 12 at 10:04 amYay!!!! Thank you for this article! I’m a mamma to a 6 year old tubie, who’s had her tube since 16 months old. She’s in kindergarten now and is fed continuously. We are in a very small, very rural town and she’s the first tube feeder to come along, especially in a mainstream classroom. I’ve answered a lot of questions, but I feel there are likely a lot of questions gone unasked out of fear or embarrassment.
Yvette commented on Feb 07 12 at 10:47 amAwesome post! Great way to raise awareness!
Niksmom commented on Feb 07 12 at 2:40 pmGreat post! Wish there had been more info about tube feeding when my son was younger. He was a micro preemie and ended up needing a feeding tube until he was nearly 6. The transition to eating “normal” foods is still in progress and he is 8 now. It was a lonely road of feeling like I had somehow failed my son in his most basic needs. So glad there is more awareness and support out there now.
Kelly P commented on Feb 08 12 at 9:21 amThank you so much for this article. I am the mother of a 1 year old who has a G-tube. I spent a lot of time morning the loss of my son breast feeding before I can to accept his need for his tube. He is healthly and so happy and we work very very hard trying to transition him back to eating orally. This article puts to words so many thoughts that I have had throughout this process. It has been very lonely process and I am excited to look into them more.
mary commented on Feb 10 12 at 8:50 ami am a care taker for a young woman who was a micro premie..she has had a tube for 25years..learned a few things..she is between sizes in tubes due to weight increase..alwyn pads cut in 4′s make good spacers and when these arent available..quilted sanitary napkins cut in 2 inch squares work great..also when break down happens..thank heavens rarely..plain vaseline around the stoma works great
Jen commented on Feb 12 12 at 12:56 amYAY…THANK YOU for acknowledging the amazing babes who have to live with these tubes and US MOMS who have it all to do and to it gracefully and with a smile on our faces….My daughter has had her feeding tube (g-tube and now Mic-Key) since 5-24-10. The docs say she will have it for the rest of her life due to GI complications and mitochondrial disease. Some days flow much easier than others….but there’s never an “easy” day, though I wouldn’t trade if for anything…and yes, even tube feeding is a wonderful way to bond…you just have to have the eyes to see it that way. My daughter also refluxes, aspirates and has dysmotility of the lower stomach/intestines and slow motility of the esophagus.
Goddess in Progress commented on Feb 16 12 at 8:50 pmThank you thank you for this post! Being a tube mom can be so very isolating.
Luce commented on Feb 16 12 at 10:25 pmwhile I have a child with feeding issues ( a TE Fistula Repair) I am ever so happy I was able to nurse him. My heart goes out to the moms and kiddos with tubes and will continue to not take the small things for granted.
Heidi Rosen commented on Feb 22 12 at 10:08 pmThank you for this article. My son was recently diagnosed with gastroparesis as well. He is, luckily, able to drink liquids and is getting enough nutrition that, for the time being, we do not need a tube.
In this article you say that in a few years you will be weaning him off the tube and he will learn how to chew, etc. What will be changing so that he will be able to eat “normally”? Is there some kind of treatment that he can get when he is older? Any information is very welcome in that I am so new to all of this information. Thanks!
Renee Aldrup commented on Apr 17 12 at 6:41 pmYAY!! My 16 old son has gastroparesis. He had a tube for several months before we were able to get him in at Shands University Hospital in Gainesville, Florida to have a gastric pacemaker placed.
Having the tube was painful and embarrassing for a 14 boy. He was fed 16 hours a day and became reclusive because of it. It’s not a joke and no way to have to live. I can’t imagine doing this for cosmetic reasons.
Annemarie commented on Apr 27 12 at 3:57 amMy son has a condition called Worster Drought Syndrome, the majority of these kids have such difficulty eating that they need a tube. We weren’t diagnosed until very late though and I struggled for up to 12 hours a day for years to get enough calories into him, we also had several hospitalisations with pneumonia after aspiration. We eventually found a haberman feeder the best option and it allowed him to not need a tube. Aged 18 he is still non-verbal but is able to eat almost everything a normal kid does. So I have mixed feelings about the tube, it certainly would have made my life soooo much easier in the early days, but I suspect that had we had a tube he might never have learnt to eat orally.
The grief associated with having a child with eating disability is a unique one, it is totally tied up with your sense of being an adequate Mum. Other people steal to make sure their kids can eat, we can’t even do that!
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