What If Your Child Couldn't Eat?Joslyn Gray
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.
“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:
1. Kori: ‘We aren’t held back from doing anything.’ 1 of 7Kori and her husband Bill are raising three kids: Mason, Maddi, and baby Ava, who is tube-fed because she aspirates (breathes in) thin liquids. Aspirating has led to several bouts of pneumonia. Ava, who lives in Michigan, is pictured here with her NG-tube, but now has a G-tube, which Kori says has made Ava's life much better. "Ava's tube is not sad," said Kori. "It's saving her life, literally." One of the hardest parts for Kori is not knowing if Ava will be able to eat and drink normally some day. But with the G-tube, Ava gets all the nutrition needs without gagging or aspirating, and gets stronger every day. "Tubes are nothing to be afraid of," Kori said. "Ava's daycare teachers and our family love her and hug her and hold her just like other babies." (Photo used with permission of family.)
2. Jenn: ‘Food destroys his esophagus.’ 2 of 7Jenn and Tom, a Pennsylvania couple, have their hands full with four kids: Brendan, Shannon, and twins Ryan and Tommy. Brendan has a feeding tube because he has Eosinophilic Esophagitis and can't eat food. Some children with EE have some foods they can eat, but Brendan currently has no safe foods. He's doing a trial of potatoes, and his family is remaining cautiously optimistic. "The hardest part of the feeding tube is that Brendan tends to get granulation around the stoma and has to get the skin burned off frequently," said Jenn. "It is very hard to see your child go through that pain. And the feeding tube scares Brendan and it is hard to see your child scared and in pain. But the best thing about the feeding tube is that Brendan has finally gained weight and is so much stronger now than ever before. He plays all sports and is strong enough to do so." Because Brendan is an active nine-year-old, he's invited to parties and family events where eating is the focus. "I always ask Brendan what he would prefer. He is not forced to go to parties or to sit while we eat. He will sit with us but it is up to him. Brendan doesn't let those things bother him." Jenn would like other people to know that "just because he has a feeding tube, it doesn't make him weird. He is just like any other nine-year-old boy. He just eats and gets his nutrition differently than his friends and teammates." (Photo used with permission of family.)
3. Carrie: ‘It’s the worst feeling in the world to know that you can’t just make your child eat.’ 3 of 7Carrie and Derick, also in Pennsylvania, have twins, Jake and Shelby. Jake had his first tube placed at 15 months due to failure to thrive. Doctors discovered the Jake had only been born with half a stomach, and that he has an extremely rare rare genetic deletion. "Only three children in the world have been diagnosed with it," said Carrie. Carrie echoed what many of these moms told me: the G-tube was a huge improvement on the NG-tube. "The NG-tube was a daily struggle, to put it in and out of his nose. And it also actually became a choking hazard for Jake. The G-tube has been in almost two years now and it's been a life saver for Jake and our family." While feeding still controls portions of their lives, Carrie has found many advantages to tube feeding. "When he gets sick I can still feed him. When you have a child with many GI issues as Jake has if he gets a stomach bug it's 10 times worse then a normal child. I can give him medications, formula, and pedialite all through one tube. If he's not having a good day eating regular food I can always hook him up and give him the nutrients he needs to keep going for the day. It's a hard family decision to put your child through a surgery to have a feeding tube placed. When we go out and people see his button they look and ask questions. I'm more than happy to answer all of them and educate them on why it's there." (Photo used with permission of family.)
4. Kari: ‘People who are tube fed just need to eat in a different way.’ 4 of 7Delaware parents Kari and Dave have two children, Kristin and Kevin. Kristin received a feeding tube just after turning two, because she was aspirating food, and also having serious reflux issues. "She now has a GJ-tube because her stomach just doesn't work well and she gets a lot of trapped air in there which needs to be vented out," explained Kari. The hardest part for Kari is "the hassle of having to be attached to other things all the time." Kristin has poor muscle tone and can't carry a backpack, which some children can use for continuous feeds. "But the best part is less stress over trying to get medications and nutrition into her." "I would really like for more people to just be aware of tube feeding and have them be more comfortable with it," said Kari. "People who are tube fed eat in a different way, but they're just eating, just like everyone else. When I syringe-feed her I get more stares than when she's just hooked up to a pump and people can't really tell whats going on." (Photo used with permission of family.)
5. Jess and Kathy: ‘It saves her life every single day.’ 5 of 7Jess and Kathy are raising three children in Kansas: Charlotte, Carter, and Delaney. Delaney has a feeding tube because she her body can't digest food properly, and she has a swallowing disorder, making her unable to eat or drink most foods safely. Delaney also has a mitochondrial disorder, making her caloric needs even more important. "The hardest part about tube feeding is all the prep work," said Kathy. "Formula must be made in advance, bags primed, pump charged, etc. It's also hard when she feels left out of eating activities." But Kathy is quick to point out that it's all worth it. "I love Delaney's 'tubie' because I know that daily it saves her life. I love that I know what goes in her body and she doesn't have to swallow all of the awful medicines she takes daily." As with most families with tube-fed children, social activities and mealtimes present a challenge. "At meal times we often play with her or let her play with fake food," said Kathy. "She has can color or play with dolls at the table. Sometimes we can get her to eat a puree and that helps her feel included." Kathy wants people to know that "a feeding tube is not scary or gross. It's just the best way to feed our child and that it saves her life every single day." (Photo used with permission of family.)
6. Laura: ‘Don’t pity her for having a feeding tube. Without it, she wouldn’t be here.’ 6 of 7Laura and Gabriel are raising their daughter Harmony, who has been tube-fed her entire life, in Nebraska. "Harmony was born with a brain injury, and is unable to swallow properly. When she tries to swallow, she ends up gulping a lot of air because things just don't work right. That also means she is at risk for aspiration (stuff going into her lungs), so it's not safe for us to try putting food in her mouth." Of the challenges of tube feeding, Laura says: "I feel like I'm constantly strategizing. If we go somewhere, I have to make sure to take her tube feeding stuff with us, since we can't just hit a fast food drive thru if it's time for her to eat. Honestly, one thing we have not been able to figure out is eating out. Harmony gets really bored sitting at a table watching us eat, as you can imagine. So sitting down to a meal at even a family friendly restaurant is just not very fun. Now that I think about it, my husband and I do a lot of tag-team eating at home, and eating at the kitchen cupboard. It's just not a family activity or social gathering really." On the plus side, "Harmony has the best diet of any two-year-old I know. She eats a blenderized diet, which is just blended up regular food. It's not a fight for her to eat her veggies, and she doesn't ask for junk food snacks. She's also not a messy eater, and never throws food on the floor for the dog," Laura joked. Laura, who brings her energy and sense of humor to the Feeding Tube Awareness Foundation as "Chief Operations Mama," says that her biggest goal "is simply that I want people to have heard of tube feeding, heard positive things about it, and know there are resources out there for parents of tube-fed children." "When Harmony got her tubie, we had a very difficult time finding information or support, as many families have. I want to change that. I want everyone to be able to say 'Oh hey, I know someone (who knows someone) who is tube fed! Hey, have you heard of FeedingTubeAwareness.org?' I want that support system to be very available and very strong." "Harmony is not defined by her feeding tube, but it is a huge part of her and is completely normal for her. It's how she has always eaten, and she is proud to be a Tubie." (Photo used with permission of family.)
Traci: ‘I have the kid he would have been all along.’ 7 of 7Traci Nagy is the founder of the Feeding Tube Awareness Foundation. She and her husband, John Cinkay, are raising their son Lucas in New York. "We don't take him to restaurants," Traci said. "One time we did, because we were in Boston for testing for him. The server brought him over crackers, because we weren't feeding him. We had to do this whole lengthy explanation as to why we weren't feeding him." Traci knows that families really struggle with the decision to start tube-feeding their child, and she wants them not to be so afraid. "I was terrified of it," she said. "I really didn't want to have to go there. It felt like, this entire journey, I didn't want to take that next step. But in every step that we took, I was so pleased that we took it. It was such a relief to not have to struggle, to get what my son needed to live, grow, and develop, into him. And to keep it into him. If you were told that your child needed oxygen, you wouldn't struggle this much. They need food and hydration. I can't tell you the difference in my son from the time that he got the G tube. He was sleeping poorly, wasn't interested in playing or learning new skills, and then he was sleeping great, laughing, happy, started to stand and cruise. He feels so much better just getting the proper nutrients in him, and being hydrated." Traci has been astounded by the changes in Lucas. "I have a different kid. I have the kid he would have been all along." (Photo used with permission of family.)