If you’re reading this blog, chances are your child was born prematurely. This article specifically deals with preemies that were not only born prematurely, but also continue to receive their nutrition by means of a feeding tube.
As a first message I would like to say that it is neither your fault that your child has a feeding tube nor has anything gone wrong in the treatment and taking care of your baby. However, the focus and attention of all the care offered has not been specifically directed at transitioning to oral feeds. We will be talking about why this would be an important step if the medical necessity for the tube has ceased to exist, how this can and should be organized, how you can help your infant catch up with it’s delayed or suppressed eating development and also how it can catch up to its current general developmental level without any medical risk.
When preterm babies should learn to eat without a feeding tube
Any infant born prematurely between the 23rd and 32nd gestational weeks should be discharged home from the neonatal intensive care unit (NICU) or the aftercare unit as an orally eating baby unless major ongoing medical complications require the feeding tube to stay in place for the time being. For preemies whose tube is no longer necessary to be able to successfully transition from tube to oral feeding, parents (under the guidance of their medical team) and the medical team themself will need to encourage oral function already on a non-nutritive level long before the infant is ready to accept any substantial oral feeding. If all goes well the whole transitioning process to full oral feeding should be completed at around the 34th gestational week. At this point the baby will probably weigh around 4.5-5.5 lbs. Latest, the preemie should be eating by the time of the formerly calculated term birthday. Medical studies have clearly shown that there are significant benefits to oral stimulation by finger or pacifier in preterm babies and that it is desirable to achieve oral feeding as soon as possible.
Which doctors are capable of releasing preterm babies without a feeding tube
As for instance in all institutions focused around the issues of self-regulation and sensitive individualized care, as is the case in most clinical centers following the guidelines and the recommendations of the NIDCAP® (neonatal individual developmental care assessment program), the ambition is explicitly to not discharge any infants - including preemies - on tube feeds. This goal is realistic and can be met by helping all preemies learn to suck and swallow in a self-regulated and coordinated manner so that they learn how the entire process works. Then, step by step and these children are guided towards being fully self sustaining by mouth and only then will the tube be removed.
Why releasing children without a feeding tube matters - The negative side effects of tube feeding
The work it takes by parents/doctors to help their child/little patient make this transition is well worth it, as oral fed infants suffer much less from the well known troubling negative side effects of feeding tubes.
In a recent study observing the largest population of tube-fed infants ever documented, the parents of 425 tube-fed infants (with both nasogastric (NG) and Percutaneous endoscopic gastrostomy (PEG) tubes) were asked to document their children’s reactions to their feeding tube. Nearly all of these children had been tube-fed since birth. The study showed that over 56% of these tube-fed children fight with gagging and retching episodes daily and 50% vomit frequently. As expected, depending on which tube the children had, their side effects varied. What’s astonishing though is that both tubes (nasogastric (NG) and percutaneous gastrostomy (PEG) tube) come with significant negative side effects and that no significant correlations could be found between age, sex, underlying medical diagnoses, type of feeding tube, feeding schedules (bolus or continuous), and parental and child’s behavior regarding the feeding situation and duration of tube feeding. This means that these side effects are endemic to the tube and unless the tube is removed, they will remain!
This is a serious problem, especially since f.e. frequent vomiting can lead to malnutrition. Recent statistics in this field show that more than 33% of all tube fed children aged 0-12 months are malnourished as defined by the criteria of the World Health Organization (WHO).
The fact of avoiding these typical tube related symptoms by early tube weaning in itself also sets lots of developmental energy free which the infant will then be able to invest into its general and motor development.
Now, what are some of the reasons why transitioning to oral feeds can be difficult or seem nearly impossible for your baby?
As a medical doctor, I’ve spent more than 30 years of my professional career working in and with NICU’s around the world. Examining and observing thousands of pre-term babies and their first attempts at eating, these are some of the most common challenges I’ve seen them struggle with:
Guidelines for what to do with a tube-fed preemie
Given that all of these challenges exist and are present in one child or another, it is very hard to give general recommendations. However, there are some guidelines which make sense for almost any situation where a preemie baby has been born and is fed with a feeding tube.
Elements to follow:
Find out if your medical team specifically wishes the tube feeding to be continued or gives your baby permission to transition to oral feeding. If you receive permission, start thinking about which medical organization you want to do the tube weaning with. Please, from the bottom of my heart, don’t try this alone on your own, it is potentially life-threatening for your child if you don’t know what you’re doing.
Since you’re not the first to go through this, I’ve asked a mother of a formerly tube-fed preemie to share with me how she went about choosing a medical partner for tube weaning her preemie. You can find her guide here.
Having helped wean hundreds of preemies from their feeding tube with my multi-disciplinary team at NoTube.com, these are some of the lessons I’ve learnt. Preemies are fighters and extremely tough. They’ve gone through so much to get to where they are and they will continue fighting! When challenged to learn how to eat orally by an experienced medical team advising parents what to do, preemies are well able to transit to oral feeding from and be fully orally sustaining by the 34th week or, in some cases, slightly earlier. During the tube weaning phase, a period of 2-4 weeks of slowed down weight development is normal and must be accepted. But it’s important to know that the task of tube weaning in prematurely born infants can only be achieved by intensive cooperation and trust between the nurses, doctors and parents!
I truly hope this article was helpful to you and would be glad to answer any comments here or to get in touch with me directly, just send me a message here!
Written by Marguerite Dunitz-Scheer, MD of notube.
7/4/2017 10:07:16 pm
I want to know more about feeding tube, it is possible cause more problem or more benefit to the preemies?
5/1/2020 11:33:22 am
Can you please tell me why do doctors not have a plan when they put a preemie on a feeding tube?
9/21/2020 02:55:33 am
I’m very sorry to read about the struggle your daughter has been thru! God bless
12/21/2017 12:23:56 pm
I am wondering if my baby should get a G tube. She was not sent home from the hospital with one. She not has GERD refulx. She is not gaining weight well.
4/21/2018 09:52:16 am
My daughter is 37 weeks they still have her feeding tube in I think it's causing her spit up and breathing episodes what can I do the hospital doesn't want to take it out she's is up to 5lb and 10oz she roots, sucks and eats just fine yes she gets sleepy sometimes but how can she ride if they don't take the training wheels off?
5/14/2018 03:12:53 pm
I am experiencing the exact same thing. My little girl was born at 34 but was more like a 33 week developmentally. She has been in the hospital for over 2 weeks now. She is off oxygen but still has the feeding tube in place. She is now considered 37 weeks but I feel her progression has stalled and it almost feels like the nurses are eager to use the feeding tube rather than give her the chance to feed on her own. She breastfeeds perfectly, takes a bottle well but just gets tired. I’m so frustrated and I feel they are not giving her the chance to succeed
6/28/2018 07:30:27 pm
Devon what was the outcome? Thanks
11/26/2018 06:31:01 pm
My grandson was born premature 5 weeks. It’s been 16 days still with the feeding tube and he’s eating not throwing up. Birth weight 5pds 14ozs now 6pds 3ozs. I want to know if you think it’s still needs the feeding tube or be released?
dr nancy ras
6/3/2019 08:05:41 pm
12/10/2019 05:34:11 am
We have experienced this exact situation. Our son born at 31 weeks and has been in the NICU for 11 weeks. He has had no issues or episodes the whole time he has been in here. The only thing keeping him here is that he hasn’t eaten 80% by mouth. He is at 50-60%. We convinced the doctor to take the tube out, but they only would for 2 days. My son had some great feeds and some very low ones, and would wake every 2-4 hours to eat until he fell asleep. He put on weight one night but because he dropped only 10 grams the next night, they said we had to put him back on the tube. We are getting discharged with the tube now, and have had to practice putting it in 6 times. It is traumatizing watching how upset my son gets. We are hoping our pediatrician will have a better approach to helping him feed. Are full term babies expected to eat at this regimen so consistently?? There are many mothers here upset about the same thing and they say their full term babies did not have these expectations. So frustrated and discouraged.
3/1/2020 04:20:48 pm
We have also had the same issue. My daughter was born at 27.5 weeks and weighed 2.6lbs. She did super well the whole time in the NICU and the only thing keeping her there was feeding. They sent us home at 41 weeks with the tube. She eats 50-60% by mouth. I was very frustrated with them not giving her a chance to ever know what it feels like to be hungry or eat on her own cues. I feel like she gained way too much weight in the NICU. I'm so worried about oral aversion but I'm not sure if just letting her eat what she wants is safe or not.
3/16/2020 10:19:32 am
Hi my son Jameson was born a few days ago at 38 weeks, and his feeding schedule is 20 ml every 2 hours and must finish it within 30 minutes , but he’s been having trouble finishing it within that time, so they’re suggesting a feeding tube, because he is what they call a “ lazy eater” I’m just wondering if that’s really the route to take , it’s not as if he is malnourished they just say because his sugars are low...
6/5/2021 11:18:47 pm
How long did your child stay in the nicu im going through the same thing with my child was born at 37weeks 3 days 6.12oz 18in long it will be 2 weeks on monday an there seems to be no end with this stay i live over 2hr away and cant vist everyday the doctor keeps changing the goal they told me once she was able to do 40-45ml every feeding they would take the tube out she doing between 45-60ml now an nothing seems to change now they want her to eat 80mls and im not sure thats right ive had np doctors tell me she at the 80% but the main doctor tells me no seems like this is never going to end an she wont come home till she 2 months old or older is there any questions i should be asking
I have a 34 week 1 day preemie. We've spent 6 and a 1/2 weeks in the NICU because of her feeding issues. Just like other comments here she also isn't finishing her 80% of feeds. We recently ended up back in the hospital for FTT (failure to thrive) to do lack of calorie intake. We got sent home with more mL's to take in. I'm just so frustrated having to deal with her spit ups sometimes very big and having to deal with her tube in general. I wish I could get a better idea of when she will just be done with this whole thing.. she is now 2 months going on 3.
11/27/2020 01:08:59 am
My son is 21 weeks old he was born at 35+4 weeks via emergency section, he didn’t take a breath for 5minutes once born and was taken to special care unit.... he was placed on a ventilator for 6 hours then fast flow oxygen for 3 days then low flow oxygen for 9 days... in this time he was being given fluids for 6 days before a NG tube to give milk... he was still getting NG feeds the day before we where discharged... the day of discharge bottles where forced down him and he went blue a few times but was discharged! He didn’t entertain bottles at home and was rushed to local children’s A&E due to going blue and not wanting the bottle, he desatted a lot when there and we spent 4 months in hospital him on NG tube then NJ tube and finally a PEG... he had a safe swallow test which showed he’s safer with thicker fluids rather than thin fluid but he still won’t take a bottle when we do try’s with thickener I have no support and he will be at weaning age in 3 weeks.... any advice will be greatly received
3/4/2021 03:41:15 am
I just had my daughter feb 5th cia c sec and coulnt breath so was put on oxygen, than two weeks later take. Off oxygen and was out on air flow for a bit , she has been there for some weeks tomorrow Friday the 5th will be 1Month old and in the NICU, she is still getting tube fed and desats so little , well today feb 3rd neurologist came by her room and told me they took scans of her brain and they see good stuff and stuff where baby can be delayed and can be a cause to why she’s eats and gets so tired she’s taking 40 to 60 mls through bottle and the are timing her for 10 min to see what se can eat well she eats but just leaves about 15 mls and the rest in by tube including another 60 mls I believe my questions here is who’ll she over come this? Do babies over come this? She is getting more test done to see if anything is stopping her or is it just timing. I need answered in not at ease I can’t sleep , im worried deep down something tells me it’s going to be ok but i am a mother I just want to feel comfortable. I see a lot of stories similar to mine . Someone please help
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