A couple of things to share for now: A message I sent in an effort to get support for Stella’s wean, and an AAP study.
Below is the actual text of an email, including excerpts from research that I paid for, that I sent to Stella’s pediatrician and OT on January 4, 2009. The next day, they called to say that a two-week “trial” without the tube would be low risk and to go ahead with it. She never looked back and began eating large amounts at about the three-week mark. She would even have days in which she consumed 1,000 mls of 24-calorie-per-ounce formula. She was about four months old at the time, and before weaning had progressed to taking in 40-50% of her formula orally. But it was stuck there, and feeding her was still quite difficult. I simply don’t know how long tube feeding would’ve persisted otherwise. I’m thankful I was truly heard and that Stella was supported in learning to eat completely on her own.
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Dear Tom and Robin,
Stella’s eating is regressing. The core issues seem to be reflux and difficulty swallowing. I strongly believe that the tube is worsening both of these, and that much longer use of the tube will cause more damage than benefit. Stella did not have this type of difficulty swallowing before the tube, I know that for sure. Her swallowing has gotten progressively worse over the last couple of months, during which time the tube has gone in and out many times. Her reflux is also still a problem and I strongly suspect that the tube is part of that. I found research which supports my intuition. See below. The cited papers are also attached.
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From paper entitled, “Infants with swallowing problems” by Helen Cockerill, from Pediatrics and Child Health 18:12 (2008):
“The presence of a nasogastric tube may provide negative stimulation and impact on respiratory support for oral feeding. Long-term use has been associated with the development of later feeding aversion.”
From paper entitled, “Effects of Nasogastric Tubes on the Young, Normal Swallowing Mechanism” by Phillipa Sarah Huggins, MSc, Seppo Kalervo Tuomi, PhD and Christopher Young, MBBS, FRCS, FFRad(D)(SA), from Dysphagia 14:157–161 (1999):
“However, there are several disadvantages to nasogastric feeding, including nasal ulceration, laryngeal injury, and pharyngeal discomfort [5]. Nasogastric tubes may also precipitate gastroesophageal reflux, which can lead to aspiration [6]. Nasogastric tubes are frequently self-extubated, especially in elderly or restless patients. Reintubation is labor intensive and distressing for the patient [4].”
“Nasogastric tubes slow swallowing in young normal adults.” (My own thought on this: It seems logical that if it affects adults this way, babies would be as affected if not more so. Slowing of swallowing seems to be exactly what is happening to Stella–she is clearly uncomfortable swallowing now in many of her feeds.)
“Sensory accommodation to the tube may counteract the earlier pharyngeal response triggering seen in this study, whereas prolonged accommodation of the tube may delay triggering of the pharyngeal swallow. This may hinder recovery of normal swallowing patterns in people with swallowing impairments and increase the likelihood of aspiration.”
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We are doing all we can to put weight on Stella to put us in a better position to go without the tube to see how she does. Are there any alternatives to the tube? Can we try cup feeding? Can we explore any other avenues (not including a G-tube which is not a route we are willing to go)? I believe that we treated her initial problems but that new problems may have arisen DUE in large part to the tube. Thank you for hearing me out and helping us resolve Stella’s feeding issue. You both have been so helpful.
I would like your honest thoughts on Stella’s progress (or lack thereof) and prognosis. We are very scared and want to know what we are up against. It’s starting to feel hopeless. We are doing out best to keep hope alive, but are desperate to seek out other ways of treating her.
Thank you,
Amber
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This NG tube study, published in PEDIATRICS (The Official Journal of the American Academy of Pediatrics), is very telling, regarding of the distress caused by NG tubes. Some of the wording and terms used in assessing the pain are haunting: “Does Nebulized Lidocaine Reduce the Pain and Distress of Nasogastric Tube Insertion in Young Children? A Randomized, Double-Blind, Placebo-Controlled Trial.”
The Life and Times of Stella 
Hi Amber,
I’m getting ready to talk to the doctors about weaning and was wondering if I could use the research you presented to your medical team? My son has severe vomiting and reflux since on the tube and I feel that the tube is doing more harm than good now and, like you, the G-tube is not an option for us. Did you wean and go back to breastfeeding or bottle? Was Stella in an ideal percentile for weight when you weaned? Thanks for such an informative blog!
Hi there! So glad you found us! Thanks for your comment. I just read most of your blog, which is great and will surely help others, and WOW, have you and your son been through a lot lately! That Clockwork Orange story was so disturbing. I’m so sorry you both had to go through that.
I have emailed you but will reply to your questions here… Stella went from the boob to the tube to the bottle (hypoallergenic formula). I was told that Stella likely had cow’s milk protein intolerance and that was really the obvious explanation for her bloody diaper, projectile vomiting (though that was rare because she barely ate) and eating refusal (she had a bit of skin rash too), etc. But I gave up dairy and soy completely for at least a month while still nursing. Even after giving up the dairy and soy, she was still in pain, diarrhea persisted, and her aversion only getting worse. I kept away from dairy and soy and pumped for another month while she was on the tube in hopes we could go back, but it was clear it was not the way to go–though I couldn’t let go at first. I had three (!) lactation consultants support me, and tell me that it was okay and that it was best for Stella, which helped. It wasn’t so much of a “decision” for me as “accepting” our new reality.
Our OT told us that sometimes, and it’s extremely rare, babies can be allergic to their own mother’s milk. I think that’s what happened to us, though I don’t have anything concrete (data/research/testing) on it. I’m so glad she got some of my milk at the beginning (11 weeks, though she had diarrhea for most of that time) but Stella needed hypoallergenic formula to thrive (she had normal stools the day after she started formula). A hard thing to accept at the time, but for Stella, I fully believe it was best. Anyway, it sounds like you are currently having great success with nursing and that you may very well wind up back to 100% breastfeeding! Fabulous! But if that doesn’t work out for whatever reason, take heart and know that either way, you’re making the best decision for him!
As for a percentile for weaning, based on my personal experience/understanding, I think it depends on the child’s history and how they are doing overall outside of the numbers. Stella was probably around the 50th percentile when she was weaned. (Context: She was in the 50th at birth and through her first month, then dropped to the 25th in the span of a couple weeks and just stopped growing… that’s when everything went to hell.) When I say a G tube wasn’t an option for us, I don’t mean to vilify them as they can be very helpful (namely if tube feeding needs to be extended, since G’s don’t interfere with eating the way NG’s do), but I just knew Stella could eat and didn’t need one. Following your gut is the way to go–you know your child best!
Stay in touch!
I am so glad to have found your site, we are about to wean our daughter off her ng tube and finding your site is great! Our little one has had her NG tube for over a year and we have to get it out, she knows how to vomit it up now and can see she is ready but the tube hinders her eating and she gets so much vomiting from it. thanks again
hi there, its so nice to read your stories. if only I had more and more time to sift through all the other stories people have shared. I’m going into hospital tomorrow with my 10month old to tube wean and to be honest i have no idea what to expect. Reading your blog and others similar i know which model has worked and will await the teams suggestions and suggest these methods to hopefully get the baby off the tube. She has had it in since birth and is putting food and other things toward her mouth. Something that she never did before but really dislikes swallowing. Your comments all rein true. The articles are so telling and describing our journey. I really hope we get somewhere because like other mums have said, i feel sometimes like its never going to come out. thanks again and best wishes to you and all other families experiencing similar circumstances
Hi.
An inspirational blog, thank you.
Am I right to understand that you weaned Stella while she still had problems with her swallow? Was this aspiration?
Thanks Anna
Hi Anna, I apologize for neglecting the blog and your comment. Did you figure out a way forward? Stella never really aspirated–that we know of. But her swallowing was affected by the tube and perhaps by inflammation from reflux. We thickened her formula to help with that. I hope you’ve found the answers you were looking for. Best wishes!
Hi there,
I just want to let your know your blog has been very inspiring. I found your blog when my 3 month old son has had an NG tube placed d/t reflux, esophagitis, and suspected cow milk protein allergy. We are currently in the weaning process and as you already knew, very frustrating and stressful. (So i’ve been going back to your blog to seek insights and support 🙂 – thank you ). Anyways, I also strongly believe that the NG tube is hindering my son’s swallowing ability. It seems like he experiences discomfort every time he swallows, which he never had before the NG tube. I’m waiting for the doctor to call back to see if she’s going to support me taking the leap of faith and pull the NG tube out… Honestly, I’m scared- but i also strongly believe that my son can do this. I just want to know how much ml as goal per day for Stella at that point of time ? did she consistently manage 40-50% of the goal before you pulled it and then how long did you wait before pulling it ??? How did you manage to give the medications to her ? thank you
thank you for sharing your story. My daughter was very small at birth 4lb 12oz, full term. she has a extremely high pallet and never could latch and had a very hard time bottle feeding. at 5 months she was diagnosed failure to thrive. we did a swallow study that showed some micro aspiration. 2 weeks later she was hit with a severe cases of rsv (repository virus) at that point they put in the NG tube. in the 2 months since then we have tried 3x to reintroduce bottle feeding and every time they have caused aspiration relapses.. on top of it she has been vomiting atleaset 1 to feeds a day more frequently. i suspect from the NG tube. Im not sure what to do at this point, God has been the only reason that I have yet to fall apart
Hi Amber,
I just googled “long term effect of NGT use in babies” and clicked your link right away. My son Arya who is now 11 months old has been on NGT for 6 months. He had a condition called Laryngeal Cleft which caused him aspiration thus pneumonia twice in a span of 5 weeks. So he had his repair surgery done on 18th December 2016. And our surgeon said we can start feeding him a teaspoon of puree everyday to promote eating habbit.
My question is, can the NGT cause a wet phlegmy noise in the throat? Because we will be returning for doctor’s check up in 18th Jan 2017, and they’ll be very concern for such noise which they associate with swallowing difficulties. But my instinct tells me that as long as the NGT is there, that phlegmy noise will never totally clears up…
Thank you,
Ida Rahmawaty,
Jakarta, Indonesia
Hello Ida! The NG tube leaves the esophagal sphincter open (that would normally close). The NG tube makes swallowing more difficult. Your concerns are valid. I recommend you do as I did and present the studies listed here to your team. This research backs up your concerns–the NG tube when used for a long time can really cause problems that interfere with eating. They owe you a plan–with this research and your wisdom/concerns in mind–to get your son eating orally again. It sounds like his initial problems preventing oral eating are resolved and so now it’s a matter of building the skills back up and allowing hunger again as possible. Please let me know how it goes! Stay in touch! I will be thinking of you. Know that you are doing a great job in an incredibly heartwrenching and isolating experience. Give yourself some credit and follow your intuition….
Hi Amber,
Thank you so much for such a quick reply… Yes I have been reading those articles…, it’s very insightful! Our doctor’s control is scheduled on 18th, I will update you with the result… once again, thank you so much for sharing your family’s journey here…
Best regards,
Ida