Weaning from Feeding Tubesadmin2020-03-12T15:20:42+00:00
Feeding Tube Awareness Foundation is in the process of working with the American Society for Parenteral and Enteral Nutrition to develop tools to determine when a child is ready for weaning off of a feeding tube. We will be updating this page as more information becomes available.
Weaning from feeding tubes can occur in several ways:
Child-led or gradual weaning – the vast majority of children who wean off of feeding tubes do so gradually over months or years, on their own schedules. Most receive feeding therapy but do not require intensive weaning programs.
Physician or therapist-led weaning schedule – when a child is medically ready, his physician or therapist may develop a weaning protocol for reducing and eventually eliminating tube feedings. This type of weaning usually takes weeks to months.
Intensive feeding programs – a small number of children, primarily with behavioral challenges or extreme oral aversions, require an intensive feeding program for weaning. These may be done inpatient, outpatient, a combination of both, or online. These programs typically take place over a few weeks, with ongoing follow-up care.
The New York Times recently ran an article, When Your Baby Won’t Eat, that includes descriptions of several types of weaning programs.
A Few Critical Points
Never wean without the permission and guidance of a physician.
Do not wean until your child can swallow several thicknesses or textures safely.
Do not wean if your child has unresolved medical conditions that impact eating.
Most importantly, your CHILD must be ready for weaning. Do not wean simply because you dislike the feeding tube and want to get rid of it.
Our 10-week-old daughter became very sick with a high fever and we rushed her to the Emergency Department. She was admitted for oxygen support, and shortly thereafter it was discovered that she had aspiration pneumonia. An NG-tube was inserted in her nose, and we were no longer able to feed her with a bottle. In a very short timeframe our world was turned upside down. Ava is our third child, and other than our first child being a “happy spitter,” we never had any experience with anything out of the ordinary in regards to feeding our children.
In the beginning, it was a tough adjustment, stressful and scary. I quickly asked the Occupational Therapist what we could do to help Ava. I didn’t want her to develop any of the oral aversions I was hearing and reading about. She gave us a vibrating Nuk brush and told us to move it around Ava’s mouth for oral stimulation, and that we could also use our clean fingers. She also suggested we let Ava keep her pacifier and use our fingers to help stretch her cheeks, so we did facial massage. Most kids who orally eat will stretch their cheeks naturally when food is in their mouths. We did not start formal therapy sessions at that time, since Ava was 3 months old.
I asked for swallow study after swallow study believing that she would pass that next test. After all, she came in drinking from the bottle. However, after 3 months of swallow studies, it became apparent that this was not a “quick fix.” Yes, she had come into the Emergency Department drinking from a bottle, but obviously not very well. There is a lot of energy and coordination that goes into swallowing, far more than I had considered, and we had to accept that it would take Ava some time to figure it out. Maybe she would never figure it out, and that had to be okay, but we would do what we could to help her, and at her pace. I never wanted feeding to be stressful for her.
After 3 months with an NG-tube our OT told us that we may want to consider a G-tube. I remember feeling relieved when she said that. An odd feeling when a mom is being told her child would need to have surgery for a more permanent feeding tube, but I hated the NG-tube – inserting it, taping it to her face, having to take it off and hurting her delicate skin. It was obvious that she would not magically begin swallowing properly, and I think that all of my hopes were so high for every swallow study because she would be able to have that tape off her face and that tube out of her nose. The truth is that when that OT told us to consider a G-tube it was like receiving permission to move forward and it wouldn’t make me a bad mom to ask about surgery for my child.
At 6 months old, Ava had her G-tube surgery and it was beautiful! We continued with the home OT exercises we had learned: the Nuk brush, facial massage, pacifier, tastes of food now that she was older. We continued to schedule swallow studies, but farther apart than before. If she passed honey thick we would practice with purees. However, she continued to get aspiration pneumonia when we would practice, so we took a break from any thicknesses for a long time, actually until she finally passed thin liquids.
Ava does not have any allergies or motility concerns, so we were able to transition her to a blenderized diet at the age of 1. We were able to wean her from continuous feeds to eating bolus feeds every 3 hours, 6 times a day to eventually 5 feeds a day – breakfast, snack, lunch, snack, dinner.
At 22 months old, Ava finally passed her thin liquid swallow study. She hadn’t had anything to orally eat in almost 1.5 years. She did not know how to drink from a bottle at that time so we transitioned right to a straw cup. I was terrified. I was afraid that even though she had passed the swallow study, she would get sick again like before when eating orally. She didn’t.
We introduced oral purees and puffs in addition to her tube feeds and Ava did fine with them, but was not very interested. I remember trying to substitute one tube fed meal with an oral meal and it took forever, so long that I had to physically restrain myself from just syringing it in. We then went back to just offering oral foods whenever she wanted for practice and tastes, but did not take away any tube feeds. Ava slowly gained more oral muscle control and coordination. After all, she had never really had to figure out how to coordinate all of the parts of chewing and swallowing. Her oral muscles needed a work out. She was also working on her pincer grasp with puffs and other soft items. We continued with this plan for 1.5 years. We did not take away any tube feeds until Ava was 3 years and 3 months old.
Shortly after her 3rd birthday, she was enrolled in an intense therapy program with Physical Therapy and Occupational Therapy. The OT portion focused on eating and teaching her biting skills. The OT would take a bite of a cracker and chew exaggeratedly and talk to Ava. Part of the exaggerated biting was to put the cracker in her mouth lengthwise – so she had to bite down quite far in order to close her mouth, which was a natural response for Ava to do. Talking her through chewing was another aspect of the therapy because Ava would bite the cracker and then let it sit in her mouth. So, we would say, “chew, chew, chew,” while mimicking the chewing. She would open and close her mouth like us with concentrated chewing. They also worked on spoon feeding with pudding or thick yogurt. We are still working on that coordination of spooning foods and not having it fall off the spoon before it gets to her mouth.
During the intense therapy program we began to notice that Ava liked crunchy foods. We introduced cheerios and other toddler foods. My husband is more adventurous than I am and started to let her have pretzels, little pieces of chicken nuggets, fish sticks, pasta, and pizza. Ava’s traditional vegetarian blenderized diet was getting substituted with traditional toddler foods. We began to feed her dinner foods at the table with us while she was simultaneously tube feeding via pump. At one point I wondered how she was fitting all of it into her stomach. We spoke with our dietitian and agreed that we could cut out the dinner tube feed and see how she did. She continued to stay on her new weight curve, which was up from her original curve when we started with the NG-tube 3 years earlier.
Surprisingly, it was our dietitian who encouraged us to continue to cut out feeds and replace orally. I thought I would be the one trying to convince her we were ready. I was scared to do this because the tube had become so integrated into our routine, I could control the amount of vegetables she was getting, and I had to figure out how to get all the calories into her and how much time it would take. The surprise was that Ava led us. She continued to grow in strength and how long it took her to eat meals. Sometimes she was the first one done. Her favorite foods became spaghetti with whole noodles and eating whole pieces of pizza. She would get mad if we cut it for her because she wanted to be like the big kids. We slowly took away the afternoon snack feed, then the lunch feed, then the morning snack feed, and last to go was the breakfast feed (because mornings were more rushed for us, I kept that one the longest).
In hindsight, I was the one who had to be brought along. Ava was ready, but I also believe that we didn’t rush her and so mealtimes stayed positive. We never forced her to eat. Once Ava was ready for more oral meals, the process went fairly quickly. It probably took a few months to completely eliminate tube feeds, but to get to that point took 3 years.
We purchased reusable squeeze pouches and in the morning we use that to help with timing, but we are still working on using a fork and spoon. Ava has low muscle tone and coordination, so this is taking more time, but she is eating everything orally. She loves to drink water and milk from her straw cups. We stopped using her tube completely 3 years after her first NG-tube was placed and removed it altogether 6 months after that.
Why do I believe we were able to successfully wean at home? Patience and Support. I loved Ava’s tube, I did not look at it as a source of stress or something I needed to get rid of, and I looked at it as a blessing that we could safely feed her. I thought I would keep the tube forever, even if she was eating and drinking orally, but the truth is that we kept it when we needed it, and now she is done. There was no time table in my head, and when the right time came to stop using it, we were all ready.
I would like to add that we were fortunate to have a great support team for Ava. My husband, my mom, Ava’s nanny, her school, her pediatrician, her dietitian, and her various therapists all supported Ava with her tube feedings and with her transition to oral eating. Nobody rushed us, scared us, or held us back. This support system and shared goal of helping Ava orally eat on her timeframe was critical to our success.
Summary of timeline from NG tube to 100% oral eating and drinking:
My son was a proud Tubie for nearly four years. We weaned Spencer at home in what we called, “Spencer-led Weaning.” It instilled our firm philosophy that Spencer would eat when he was ready to. We never felt a sense of urgency to get him off tube feeds and just followed his lead. Other than working with a speech and occupational therapist, we weaned Spencer without the use of any type of feeding program. It took 4 years, but Spencer is now tube-free.
Spencer has Say Barber Biesecker Young-Simpson Syndrome (SBBYSS), a subtype of Ohdo Syndrome. As part of his syndrome, Spencer also has Pierre Robin Sequence. He was born with a cleft palate, cranio-facial muscle weakness, and tracheomalacia. While eating has always been safe for him, Spencer never really figured out how to coordinate breathing, sucking, and swallowing. He had an NG-tube placed when he was 1 day old. We tried feeding him with a special feeder for babies with a cleft lip or palate, but he never made much progress. When it became apparent that his feeding difficulties were going to be long term, we had a G-tube placed. I am completely confident that having his G- tube placed was the best medical decision Spencer’s father and I have ever made.
Spencer never made any progress with bottle feeding. After being released from the NICU at 3 months old, he lost his suck completely. Since he would refuse his bottle and pacifier, we worked with a NUK brush and vibrating teethers for oral stimulation. When he was 6 months old, we began to try baby foods, which he enjoyed at first, but eventually began to reject. He quickly became orally defensive and we suspected this was caused by a combination of frequent colds (which are extra miserable with a submucousal cleft palate), chronic vomiting, and reflux. While discouraged, we still offered Spencer foods from time to time, but didn’t dwell on it when he refused. However, the on the rare occasions he would try something, we celebrated! Even the smallest taste gave us hope that he would eat orally someday.
Things began to change shortly after we switched him to a Blended Diet (BD). During his babyhood, we tried multiple formulas, all of which failed for him. They would work for a week or two and then he would start projectile vomiting again. After failing Pediasure at 13 months old, and tired of living in a world covered in rancid vanilla, I decided to give Blended Dieting a try. I had no idea what I was doing, but quickly figured things out with the help of the online BD feeding community. We were also fortunate to have a GI and medical team who were very supportive of BD. After some trial and error, I found a blend that worked well for Spencer and his vomiting disappeared.
We never gave up on offering Spencer food. One day, when Spencer was around 18 months old, and we had been on blended diet exclusively for around 4 months, he eagerly accepted a cereal puff. Confused, because after all this was my child who didn’t eat, I suspiciously offered him another. He eagerly ate that one as well and many more after that. I thought for sure there was no way he’d do it again, but he did it again later that day and the days that followed. Of course, this all happened right before his cleft palate repair. I was sure that he wouldn’t eat after his surgery, but as soon as he started feeling better, he proved me wrong.
So we started small. Once he decided cereal puffs were super awesome, we tried other foods with similar textures, like puff popcorn and baby “Cheetos.” Then we slowly started giving him something else in addition to the puffs, like a small piece of bread. Then we added peanut butter to the bread, and so on. With the help of his amazing speech and occupational therapists, we built a slow but solid foundation for eating. During this time, we did not use a utensil to feed him with because he was still fairly sensitive about anything coming near his face. While we weren’t seeing a ton of volume, we felt that any eating was good eating.
When he was around two and a half, and after he had been doing small volumes for a while and had become more accepting of different textures, I decided Spencer and I were going to start eat dinner together. I made him a small plate of exactly what I was eating. I thought to myself, “There is no way he’s going to eat all of this.” We sat down and I fed him (with my fingers) and he ate everything on his plate. We celebrated and I took a picture. The next night, I made him a larger plate, and he cleaned that one as well. I began to hold off doing his blended diet feed via syringe until after he ate orally.
Eventually, he began to eat so much at dinner that he had enough caloric intake to skip doing the BD feed. We started adding in more meals and skipping more tube feeds. Eventually we were doing meals and snacks on a similar schedule to his old tube feeding schedule, with the occasional water bolus throughout the day.
It took a while to get him to eat from a spoon and to drink enough to get by. After offering him the spoon and getting shot down for months, one day he randomly decided it wasn’t such a bad idea anymore. To get him to drink, we tried a variety of different sippy cups and found a Playtex straw training cup where the parent could assistive squeeze. It took a few months, but eventually he learned how to drink from a straw without help. Even though he was drinking, we still struggled to get him to drink enough to stop doing water boluses. Apparently, at least according to Spencer, the secret is finding something they absolutely love and let them drink it all the time. One day, Spencer was eying his cousin’s Yoohoo, so we grabbed him one. He sucked down an entire box and then another. The kid would drink Yoohoo like crazy, so we just went with it. We eventually traded Yoohoo in for water and juice.
It hasn’t been easy teaching Spencer to eat and while his eating isn’t perfect, he’s eating! We never gave up on Spencer and we knew he would eat when he was ready. It took him 4 years, but he did it! We are so incredibly proud of our Super Tubie Graduate!
Our daughter, Evey, was born with a rare genetic syndrome called Koolen de-Vries Syndrome. Even though she was undiagnosed in utero, it was apparent from birth that she had a prevalent syndrome with birth defects. From there began our tube feeding journey. We started with an NG-tube, which progressed to an NJ-tube, and finally, at 4 months old, we had her G-tube surgically placed. It was later changed out to a GJ-tube.
As she had other surgeries to stabilize her physically and to help her grow bigger, we realized it might be time to start the weaning process. When Evey was 2 years old, and after consulting with her GI doctor, her nutritionist, and occupational therapist, we realized the first step of the process was to get her off the GJ-tube and back on the G-tube.
We started by doing small continuous feeds through the stomach, with a food-based formula, and she tolerated the transition back to the G-tube. Then, we started doing very small amounts of blended real food through her G-tube, to see how her stomach would tolerate it. This process was very difficult because her stomach would get upset, and we were back to dealing with more vomiting episodes. So, we pulled back on the formula through her G-tube, and tried to do more real foods, and it worked much better. This was a very scary process because we didn’t want her to lose the weight we had fought so hard for her to gain, but we were also very carefully guided by professionals that told us this would be part of the process, and not to be paranoid about every ounce gain or lost.
From there, we started oral feeds, with food, blended in a blender. We knew she wanted more than just typical baby foods, so we tried as much as possible to give her food similar to what we were feeding our other children – but blended. She was very excited to get these meals and to have real, grown-up kid food.
We worked really hard with the occupational therapist with her sucking reflex, using the honey bear bottle, and she picked it up rather quickly. She still grew tired very easily of just drinking, so we still had to supplement her liquids through the G-tube, which, sadly, caused more vomiting spells.
After a couple months of having one foot off the feeding tube path and one foot in, with vomiting issues, we were both growing exhausted. I became rather discouraged, and I didn’t know how she would ever take all food and drink orally. I decided to try one last visit to our nutritionist to see what else I could do. My nutritionist happened to be out of the office and there was a new one visiting from another hospital, so I quickly explained our situation. She looked at Evey’s file, and after bouncing a few ideas off one another, we both agreed we should go cold turkey off the feeding tube for 3 days. Of course, I would have to be vigilant about all calorie and liquid intake, but I think Evey and her stomach just needed the reminder that she could eat and drink 100% on her own.
We forged ahead with our plan, and I made sure to give her all of her favorite foods that taught her to eat, ice cream and French fries, with lots of carnation supplement in her whole milk, and wouldn’t you know – after 3 days, she finally did it! We were officially off the feeding tube!
The month after weaning her off the feeding tube, she gained 2 pounds – the most she had gained in a month, ever! I’ll be honest when I say that we didn’t experiment with the most nutritional foods at that time; our goal was caloric intake, and it worked perfectly.
Evey has now been completely weaned for over a year now and eats like a typical, ravenous 3-year-old! Our weaning experience was a super long, challenging process, but so worth it in the end. We are so grateful for the feeding tube, and we know it saved Evey’s life. We also know that when the time is right and the professionals agree that it is possible to wean a child off the feeding tube and there is always hope for oral feeds.
My son Josh was born with Pierre Robin Sequence (PRS) and a rare chromosome disorder called 4Q deletion syndrome. Children born with PRS have a recessed jaw and a cleft palate, which causes trouble with both breathing and eating. Children with 4Q deletions often have feeding and swallowing difficulties as well. Josh started using an NG-tube on the day he was born, and he had a Mic-Key G-button placed at 4 months. Although he was able to start tasting food as an infant, he was almost exclusively tube fed for his first 18 months, while he underwent a series of craniofacial surgeries that made it safer and easier for him to eat.
After he finished the surgeries and passed a swallow study, his pediatrician recommended that we immediately start an aggressive tube weaning program (cutting the number and volume of daily tube feeds he received by a third), which she hoped would kick-start his oral eating by making him feel hungry. We tried that for a month, but his oral eating did not take off as hoped, and instead he just lost weight. At that point, we realized that he still had some weakness with chewing and swallowing, as well as a significant oral aversion to almost all foods.
We started him in feeding therapy with an occupational therapist, we increased his tube feeds back up to previous levels, and we let him work on oral eating at a pace that was comfortable for him. Every 3 months, we made a list of everything he ate orally for a week, and then we would check in with a nutritionist to see how he was doing with calories and nutrition and decide whether we could decrease the volume of tube feeds. Just to be clear, we were not waiting for him to get to the point where he ate a perfectly balanced diet of all the most nutritious table foods – his diet was and still is extremely limited, mostly pureed, smooth, or easy foods, and was never the table food I prepared for the rest of the family. His nutritionist understood the limitations and was not looking for perfection, but she helped us make sure that he wasn’t experiencing any serious nutritional deficiencies from his limited diet.
He made progress very slowly, and sometimes (often?) it felt like we would never get to the point of tube weaning. There were many days where I felt discouraged about the slowness of the process – even though I know each child goes at his or her own pace, it sometimes felt like we were stuck in a permanent rut. But we were so grateful to have the feeding tube, so that he could stay healthy and continue growing and developing while we found the oral eating approach that would work for him.
The tube weaning process took a few years, but eventually Josh increased his daily calorie intake enough that we were able to stop using his G-button, and we found the combination of foods that he was able to eat, willing to tolerate, and that would provide him a good nutritional balance. We still use supplements, high-calorie nutritional drinks, and multi-vitamins to round out his limited diet. The doctors decided to keep Josh’s G-button in for a full year after he stopped using it to make sure that he would continue to gain weight, take his medicines, and continue to orally eat as we made some big changes (our family moved across the country during this process).
Our GI doctor gave permission for us to take out the G-button around Joshua’s 5th birthday. We took the button out at home, and we celebrated with cupcakes with green frosting and sprinkles (Josh’s request). We covered his stoma with gauze and medical tape for the first week, but it stopped leaking after the first few hours. Josh did great with the button removal! We thought that it might be really hard for him to see it go, since he had it in place for his whole life and we all treated it like a part of his body, like a second belly button. But I think it helped that he had some control in the process (he helped us take the button out for the final time) and that we had a celebration (so he understood that it was a positive change). We had an appointment with our pediatric surgeon a month later, and the surgeon said that he didn’t need it surgically closed since the stoma stopped leaking on its own.
To any of you who are weaning your super tubie, please don’t be discouraged if it takes a long time, and especially don’t be discouraged if it takes longer than your doctors think it should. Our doctors seemed to be mystified that Josh couldn’t eat 100% orally the minute he passed his swallow study. But in connecting with other families, I’ve learned that every child really is different in how they wean – they all have different medical and developmental needs, not to mention different personalities! You know your kid best, and for many kids, letting them take their time with the tube weaning process is the best (and only) thing you can do.