Welcome to all you parents seeking tips on how to wean your child off of an NG tube or G tube! My heart goes out to you, and I commend your research efforts that somehow landed you here. I want to say, “Keep going!” But I know you will.
It’s hard because the isolation and desperation can be all-encompassing, since no one else seems to understand how stressful and heartbreaking tube feeding can be when there is so little weaning support available to you. That’s why I’d like to share Stella’s tube weaning experience, some rare and compelling tube weaning research and let you know that there are many amazing tube weaning success stories out there involving children and babies, some who’d never, ever eaten before their weans! For years! Please be sure to visit the Tube Weaning Stories page for some inspiring examples.
To help you find some key weaning information on this site, I’m listing the top references and resources here. This is the best of what I can offer you based on my personal experience. I’m not a medical expert, just a mom who’s been through it. I hope this helps you along your path toward the unique discoveries, people, and information you need to reach a tube-free destination. Your child deserves to enjoy food, and you deserve to find some peace.
A table of contents for the info below:
- Research and guidelines for weaning, including a MUST-SEE lecture by a world-renowned weaning expert from Germany
- Online tube weaning support group
- Tube weaning clinics and experts (pros and cons of Graz, and endorsements for Spectrum Pediatrics, Seattle Children’s Hospital, and Markus Wilken)
- Occupational therapy
- Feeding strategies that worked for Stella
- Be brave, and kind to yourself
1. Research and guidelines for weaning
An ABSOLUTE MUST-SEE: Markus Wilken’s lecture about basic principles of tube weaning and self-regulation, delivered at Seattle Children’s Hospital in May 2010. Markus is a child psychologist who worked at Graz and now does tube weaning and management at a hospital in Germany. He’s successfully weaned over 400 children. He has performed home-based weans during his trips to Seattle, freeing kids in our community from their tubes! If the above link doesn’t work, try copying and pasting it from below (you may need to remove the mms for it to work): mms://seattlechildrens.wm.internapcdn.net/seattlechildrens_vitalstream_com/Rehab_5-27-10.wmv
Prevention and treatment of tube dependency in infancy and early childhood, published in ICAN: Infant, Child, & Adolescent Nutrition, Vol. 1, No. 2, 73-82 (2009).
Standardized tube weaning in children with long-term feeding-tube dependency: Retrospective analysis of 221 patients, for publication in Infant Mental Health Journal.
I would like to call out one of many GREAT points in this research, which came from the renowned tube weaning clinic in Graz, Austria. Tubes should never be put in without a PLAN to take them out! Get your child’s medical plan to agree on a tube weaning approach. Demand it and don’t take no for an answer.Show them this research–most medical professionals have very little specific expertise on tube weaning. This research is precious and rare and we need to spread the word.
The Crunchy and the Smooth is a blog, written by an incredibly brave and intelligent mother, that documents the successful wean of her young toddler, Heath, who was 100% tube-fed until Markus Wilken arrived to help oversee an intensive and incredibly transformative wean. Simply amazing. Check out her rich, eye-opening resources page, too. She’s done a ton of extremely valuable research on the topic of tube weaning and the associated trauma.
Research on the risks of long-term NG tube use. NG-tube-fed babies and kids face many risks, please read this post if your child has recently been given an NG tube or if they’ve been fed through an NG tube for any extended period of time. No one really tells you about the drawbacks and problems of tubes, especially NG’s! Please know that NG tubes are meant for very short-term use only, and can worsen or trigger feeding aversions. Here’s why.
2. Online tube weaning support group
Please visit Tube Fed Children Deserve to Eat, it’s a social network on Ning, that is aimed at “Connecting Parents of Children with Tube Feeding Issues.” To me, it felt chaotic at times, because weaning is hard and reading about others’ panic when you are going through it yourself can be counterproductive. That said, you can also find great information, invaluable camaraderie, and wonderful support. Tube feeding and weaning can be so lonely. It’s nice to connect with those who “get it.” To be clear, the focus of group conversation is definitely on weaning.
3. Tube weaning clinics and experts
You may have heard of the Graz model of tube weaning. It’s known for it’s underpinning of hunger as the motivator for eating (as opposed to artificial rewards, etc.) and that the child must be in total control of their own intake and not pressured to eat. The Graz clinic reports a high success rate with weaning babies and children of all ages–the ones who are not able to be weaned often have many serious health issues that make eating impossible, not “just” a feeding aversion or tube dependency. The clinic’s URL is notube. at.
The cost of flying to Austria and receiving treatment there is high. Thankfully, as you’ll read below, it’s not necessary for everyone to fly all the way to Austria as there are alternatives. Recently there have been some negative experiences reported there–with feeding and therapy practices similar to those more forceful methods seen in clinics with behavioral approaches wherein natural hunger and child autonomy are not central to the process. While all children are different and no one approach fits all, I believe those two elements are crucial to tube weaning. I don’t have a clear picture of what the Graz experience is like these days, so your own research will be crucial in evaluating it, of course!
The Graz clinic launched an arm of operation for “netcoaching,” internet-based weaning support, which was helpful to me and Stella. However, the program has expanded greatly and changed drastically since we participated. The cost has skyrocketed, and there is debate about whether the value provided matches the price tag. Netcoaching is probably best for those babies or kids who are already eating some on their own–perhaps not for babies or kids who are not eating at all and whose parents really need real hands-on support. Stella was taking about 40% of her formula orally when we started our wean and the most valuable thing I got from netcoaching was simple but powerful confidence that Stella could wean successfully. Weaning is usually scary and very stressful–even when it’s going well. It’s a leap of faith. Netcoaching is basically email-based (via an online ticket system), and it can take up to 48 hours for them to respond to your questions and concerns. Two days feels like a decade when you’re in the midst of a wean and need answers “NOW.” More direct help is definitely preferable, though sadly not always possible, depending on where you live. In that vein, I’m happy to present these wonderful options:
Seattle Children’s Hospital now has a tube weaning program! Caloric reduction and respect for the child are pillars of this program. The waiting list is long, but they have plans to expand. I’m truly thrilled that this program exists in my city, and not surprised, given the quality of therapists we met there during our tube-feeding time.
Spectrum Pediatrics in Virginia has a feeding tube weaning program! I recommend this program highly, because of their philosophy. From their feeding therapy page: “We never bribe children or force them to eat when they are signaling that this is not what they want.”
Markus Wilken is referred to above, with a link to one of his lectures. In my eyes, he is a weaning superhero. He helped our dear friend Heath with his resoundingly successful and impressive wean (Heath went from 0% oral intake to 100%) and this is just one of hundreds of stories. Markus is based in Germany but works with Spectrum Pediatrics and helps with home-based weans around the world. He is a world-renowned tube weaning expert, child psychologist, and champion for tube-fed children. You can find Markus online at his website (and you can use Google to translate it):
A description of Markus’ work, taken directly from this Facebook page:
“In the last 10 years home-based feeding tube weaning became an established treatment in Germany by Martina Jotzo and Markus Wilken. Research on this method has shown, that 90 % of the children that we have treated can be successfully weaned. Inpatient tube weaning, as well as outpatient Speech and Language Therapy, Occupational Therapy and Physiotherapy are central elements in the care of children with feeding tube dependency. We think home-based weaning should be established as a further treatment for children with feeding tube dependency not just in one country, but in all countries. We would like to find out more about the treatment approaches in different countries and how to integrate home-based tube weaning.”
4. Occupational Therapy
Stella’s occupational therapist, Robin Glass, was central to her recovery. We were blessed to find an absolute rock star in the field. She is a real expert on infant feeding issues and very wise and experienced. Robin gave me confidence, even when our pediatrician had doubts! She knew Stella because she’d worked with us in person. Robin told me from the start that Stella could do this and that she would leave the tube behind. We met with her weekly, and it was huge for us. Find your own Robin, someone who truly understands the dynamics of feeding and weaning, and work with them to come up with a plan for weaning. Then, if you can, get everyone else on board–pediatricians, GI, etc.
5. Feeding Strategies that Worked for Stella
Here, we’d like to share with you the specific feeding strategies that have worked for us. Please note that Stella was weaned from the tube when she was just four months old. Age plays a big role in how to appropriately approach weaning and feeding, of course!They may or may not work for your child and we are not doctors, but we know how stressful it is to deal with feeding difficulties and would be thrilled if these tips and tricks make life a little easier for just one other family.
Best of luck. And if you have any feeding tips to share, please let me know and I’ll add them to the list!
HANDS-ON TACTICS USED DURING STELLA’S AVERSION (INFANT-CENTERED)
We used to do the following, when Stella’s feeding aversion was in full effect. I think each feeding was a form of therapy. The main thing we did, however, was to not force the bottle in any fashion. We let her tell us if she was hungry, we let her decide how much she wanted to take from the bottle, even if it was zero mls sometimes. Ending the battle is step #1. Otherwise, no feeding strategy is going to work.
Stella is a very squirmy, active baby. She never stops moving and has been like this from the beginning. It’s very fun, but can get in the way of eating. When her aversion reached its peak, she would push away the bottle or block her mouth with her flailing arms and hands. So as we worked on overcoming her feeding aversion, we would very lightly and loosely swaddle her when we fed her. Please note that we did not force-feed her. We would bring the bottle to her lips and it was up to her to accept or reject it. Her arms could still move a bit, and sometimes her hands would poke out and I’d let her hold one of my fingers while I fed her. But she stayed much more calm this way, and focused on eating rather than grabbing at or playing with the bottle, my shirt, etc. It was a big day when we were first able to feed her without swaddling her, but for a while, it was a huge key to successful feeding.
Standing, Squatting and Shushing
Back when Stella still had the aversion and as we worked with her to over come it, we’d stand up to feed her, holding her in a cradle position while keeping her body straight and at an angle so that her head was higher than the rest of her body. We were careful to not let her head tilt to far back, to prevent any gagging or choking, as she had some swallowing difficulties. When she needed some extra calming, we’d even do squats while feeding her. The up-and-down motion helped Stella mellow out. Sometimes, I’d also shush her in the rhythm of my squatting.
Yes, standing (with a 15-pounder in one arm) while squatting and shushing is a lot of work and I’d often get out of breath! But I knew it wouldn’t be like that forever, and it was worth it if it helped her eat comfortably on days when she needs a little extra support in order to get in the eating groove.
The jury is still out on this, but I suppose it’s worth a shot if you suspect that your little one simply dislikes the nasty taste of formula–especially hypoallergenic formula. Stella’s Elecare smelled like feet and tasted like a ground-up multivitamin. One evening, back in our tube weaning time, I was desperate because we’d tried EVERYTHING and Stella wasn’t making as much progress as we’d hoped. We added a bit of baby food to the bottle, just enough to add a more appetizing flavor. I used organic Gerber bananas, because they are incredibly smooth and highly caloric (believe me, I compared all the brands to figure out which would be most suitable). Lo and behold, she started eating more.
It could’ve been coincidence. But breast milk is supposedly flavored by whatever mom eats. So even if flavor wasn’t one of the reasons she came around to liking the bottle, I like the idea of giving Stella a more interesting and tasty experience.
Removal of the Tube!
I wanted to note that Stella was really bothered by the NG tube. It affected her swallowing, exacerbated her reflux, and prevented her from ever feeling very hungry, since we were pumping food into her at night and whenever she didn’t take a full feeding during the day. We had to push to get support from her doctor to take it out. As soon as we did, her eating improved dramatically! It took about three weeks for her to start gaining weight again, as her intake ramped up, but she never lost weight.
I don’t know if it happens this way for every baby, but Stella’s recovery was SPECTACULAR. After she’d been given those three weeks without the tube, a switch in Stella’s brain was flipped. Something clicked, and she started to enjoy eating. It was like magic. Where once she would scream and cry at the sight of the bottle, she started to lunge at it and cry when it was taken away! In our case, faith and patience paid off. As Marguerite as the Graz tube weaning clinic explained, it takes time for the baby to adjust to feeling hunger and getting in touch with what that means and how to address it (by eating). For Stella, it took three weeks. I think many parents are tempted to put that tube right back in after a few days of their newly tube-free baby not eating “enough.” But if the child has energy and generally seems okay, and you have support from a doctor or some sort of medical professional who is aware of your weaning efforts, I say hang in there!
So to sum it up, at first, the tube was helpful in allowing us to get some calories into Stella’s belly without having to fight with her over every feeding. We could simply stop when she wanted to stop. Our occupational therapist put it brilliantly. She said we had to let Stella say “no,” and have her feel that she was really being heard, to enable her to later be comfortable enough to say “yes.” But after a while, the tube caused more problems than it solved. Therefore, I am very concerned about longterm use of NG tubes. Here is an article about preventing tube dependency and guidelines for weaning.
My feeling is that babies and children without major health issues, who may not eat much at a time but have shown that they have the physical ability to eat, and whose pain or source of aversion has been identified and addressed (i.e. reflux medication given), should be given a month to show that they can thrive without the tube! If this is your situation, make a case for it and get the support you need to wean your child off the tube. The tube weaning clinic in Graz, Austria has a very high success rate with weaning, and it’s all based on the idea that most children will eat if freed from tubes, allowed to feel hunger, and able to determine when and how much they want to eat. Once the core issue is treated, we have to trust our little ones to know what is best for them, which I know is hard to do after the trials and tribulations of a feeding aversion.
In the time immediately following the resolution of Stella’s feeding aversion, a few weeks after the tube’s removal, we didn’t have to go to great lengths to ensure a good feeding. However, we still had to take a couple of extra steps to make sure swallowing was easier and she didn’t get too distracted.
Update: FDA has reported very serious side effects for some infants whose feedings are thickened with Simply Thick. The product should not be given to premature babies in particular.
We started out with a ratio of one packet of Simply Thick (nectar consistency) per six ounces of formula and using a Dr. Brown’s number 2 nipple. This was too slow for Stella. She was bored and uninterested. So we changed the ratio to one packet of Simply Thick to eight ounces of formula and saw improvement. But we thought she still seemed a little bored (there were too many sucks per swallow), so we switched to a number three nipple. Even better, but we noticed some difficulty swallowing, so we adjusted the ratio once again to one packet of Simply Thick per seven ounces of formula, using the number three nipple. It took us a while to get there, but once we did, it made a huge difference!
This ratio lasted a while and got us through the tube weaning period successfully, but as Stella improved, we adjusted. It wasn’t long before we used a number 4 Dr. Brown’s nipple. Then, Stella evolved to the point where we were using one packet of Simply Thick with 12 ounces of formula (with the number 4 nipple). Then, we weaned her off of Simply Thick altogether (but went down to a number 3 nipple as unthickened with a number 4 was too fast for her, and really too fast for most babies).
How did I know to adjust the amount of thickener? How could I tell that Stella had improved? It’s hard to explain, but mostly, I gauged her overall comfort level during feeding. For instance, early on, a bit of formula used to dribble out of her mouth during feedings. When that stopped, I knew her feeding and swallowing skills had improved. But in general, I knew I could gradually reduce thickening as she got more practice.
We encountered an issue with Simply Thick in that it can clog the nipple if it is not completely emulsified. We had simply been shaking it up in a large bottle, and clogging became a common problem. I called Simply Thick customer service and they recommended whisking. So, based on that, we mixed the formula powder, water and Simply Thick in Dr. Brown’s Formula Mixing Pitcher, then I used a small metal whisk to mix it up even more, and then I shook it in the bottle before feeding. It sound like a lot of work, but it’s not too bad, and we completely solved the clogging issue!
You probably already know this, and I allude to this above, but you can figure out if you’ve found the right combination of thickener and nipple flow by watching and listening. There should be two or three sucks before each swallow. Breathing should sound pretty smooth and steady. With Stella, any gasping and panting meant the milk was flowing to fast and she would quickly pull away from the bottle, sometimes gagging or choking a bit, or crying.
Quiet, Dimly Lit Setting
Stella still takes a bottle most comfortably and calmly in a quiet, dim room. Eating was her most immature skill, so it was very easily thrown off by distractions. Taking her to a quiet place helped her relax and remain focused on eating. I enjoyed feeding her in this setting as well. Very peaceful.
For a while, after swaddling during eating was not necessary, we put Stella in a sleep sack when we fed her. I put a question mark next to this one because I’m not really sure how much of a difference it made. But I think it served as a good cue and calming influence. Stella is very active and likes to flail her legs, whichgot her more riled up and distracted her from feeding. With the sleep sack, she may’ve felt a bit more contained and secure.
Dr. Brown’s Bottles
We use Dr. Brown’s bottles and really like them. The excellent occupational therapists at Seatttle Children’s Hospital use them. In fact, they gave us our first couple of bottles during our hospital stay, and we’ve stuck with Dr. Brown’s ever since. Stella isn’t too gassy or gaggy, and she’s never had an ear infection, which may be partly attributable to the bottles. The bottles are BPA-free, of course. Their wide-neck bottles recently became available in BPA-free as well. I heard from a salesperson at Babies R Us that many moms believe that the wide-neck bottles reduce gagging and that they more closely mimic breastfeeding.
Formula Mixing Pitcher
Dr. Brown’s Formula Mixing Pitcher was very helpful in that we could easily whip up a large batch of thickened formula. The propeller, which spins when you pump the handle, ensures there are no lumps of unmixed formula or thickener. Just make sure you don’t let the propeller go above the surface of the formula as you are mixing, or it could create air bubbles. Honestly, I don’t know how we got by without this pitcher.
Side note: I recently read a study, on the Dr. Brown’s website, about nutrient loss in formula and breast milk–during feedings and whenever exposed to air. It happens pretty quickly. So it’s best to store it in bottles that are as full as can be, with as little air above the prepared formula as possible. I do think that this is somewhat alarmist news, and I don’t really give it much thought. But it’s good to be aware of.
6. Be fierce! And kind to yourself.
Health care is letting down most tube-fed children. You really have to take matters into your own hands, and make it happen. The technology that enables tube feeding is outpacing our understanding of it’s impact on babies and children. The vast majority of doctors just don’t have a handle on how to manage tube feeding, and they don’t have a clue about weaning. (Hence the importance of having an experienced OT or feeding expert on your team–just don’t be afraid to push them for answers and planning when it comes to weaning.)
I can’t tell you how many times I cried and pleaded to doctors and therapists. I got hysterical. I pushed and pushed and pushed. I think you have to be really proactive to get the support you need, because health care is not stepping up to help tube-fed children in most countries. It’s an outrage. Do not take no for an answer. If your child has the ability to eat but not the willingness, there is a high likelihood that they can learn to enjoy food. Unfortunately, you have to be a warrior to make it happen. You can do it. Stella and I know you can! Listen to that little voice in your head that says your baby deserves better and can eat if given a chance.
Feeding tubes save lives. If your child simply does not have the ability to eat, you live with deep gratitude for this technology. On the other hand, sometimes the initial issues preventing eating are resolved and tube feeding continues, without end in sight. So many parents in such situations feel desperate to wean their children but have no support–sometimes, weaning is never mentioned to them and everyone seems to be waiting for the child (who feels no hunger and has no relationship or experience with eating) to magically start eating and THEN the tube will go away. Feeding aversions and tubes are pretty much a nightmare. I am not alone when I say I almost lost my mind. For months, from before the tube when Stella wouldn’t eat through the weeks when tube-feeding started to prevent her from eating, I didn’t sleep much, didn’t eat much, and didn’t take care of myself. I was falling apart. But I did hire a postpartum doula to give myself a break a few times. I did go get my hair cut. I did manage to get three hours of sleep at a time now and then–which is necessary for a full cycle of sleep. If you’re on a feeding schedule that is driving you insane with exhaustion or chaining you to the feeding tube, talk to the doctors about room for flexibility or changing the schedule. I know you won’t be okay until your child is okay, but do your best to take care of yourself, so you can be strong for your little one.
I wish you the very best. We got through it and so can you.