NEONATAL INTENSIVE CARE AWARENESS MONTH
  • Home
  • About
    • History
    • Blog
    • Contact
  • GET INVOLVED
    • Start a Fundraiser
    • Supporter Toolkit
    • Partner Toolkit
    • Become a Sponsor
    • Become a Nonprofit Partner
    • Initiative Days
    • Random Acts of Kindness
    • Share Your Story
    • Remembrance Day
  • Nurture Award
  • Partners
  • Give
  • Resources
    • Disorder Resources
    • NICU Resources
    • Regional NICU Resources
    • For Health Professionals
  • Honoring all NICU babies

The 9 reasons why preemies are more often tube dependent than infants born at term

11/6/2015

 
Picture
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:
  1. The development of the intrauterine sucking-swallowing coordination process is interrupted by the premature birth
  2. The lungs are immature and not yet equipped to breathe without mechanical and/or medical support
  3. The ability to thermoregulate needs to be taken care of first, so there’s no space to take care of feeding
  4. The dominance of stabilizing safe breathing patterns and other airway problems interfere with the emerging swallow coordination
  5. The premature born infant might be too sick and fragile to manage breathing and eating challenges at the same time
  6. Repeated aversive intraoral actions (intubation, repeated suctions etc.) can be traumatic for the baby
  7. Increased physiological reflux due to very low muscular tone can lead to an oral aversion
  8. Additional medical complications like sepsis or surgeries make tube weaning impossible
  9. Lacking aftercare structures in the hospital, no tube management-maintenance team, no exit strategy
 
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:

  • If your baby could not be discharged from the NICU as an orally drinking infant, please ask your team for the reasons and ask for clearly defined nutritional goals to be met before embarking on a tube weaning trial at home together with the medical team of your choice.
  • As shown above, enteral nutrition support does not guarantee sufficient growth, so inquire with your medical team whether malnourishment is present and if the tube has been present for some months, how they plan on leading your child to a healthy state
  • If your child is not malnourished, ask your medical team why the feeding tube is still in and what elements are needed for it to be removed. It is the medical teams’ responsibility to provide you with a clear exit strategy unless underlying medical conditions make the feeding tube absolutely necessary (f.e. if the child has no swallow reflex).
  • If you want to tube wean your child, a developmentally adjusted and highly individualized approach is necessary for each child, please ask your nurse and medical staff how they feel about the issue of discontinuation of tube feeds and look for the most specialized place you can find. Tube weaning is not an easy operation that any hospital can do and you really want to make sure you’re getting the best support you can.
  • Please don’t ever try to force feed your child before, during or after tube weaning (even when someone tells you to), the literature has clearly found that it is harmful at all times.
 
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. 
sarthona
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?

It can help to prevent the NEC or can lead to have NEC?

Debta
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?
My granddaughter was born at 24 weeks exactly because my daughter discovered at her 20 week ultrasound that she has a short cervix.
The baby born by emergency c section weight 1 lb 3ozs. She had pad so at 5 days old was put on a ventilator. She did well and her oxygen level was around 25-30 but they stilled refused to take her off ventilator and if she would have a minute of a change in her oxygen saturation certain nurses would i increase her oxygen so high that it damaged her lungs now she has lung issues.
At 34 weeks my daughter had her transferred to Nationwide Children's Hospital in Columbus Ohio. She was told that they could get her off the ventilator and wers going to treat her PDA. She remained on the ventilator until she was around 43 weeks when after my daughter pleaded with doctors to put her on cpap. She was on it for 6 weeks and now she is on a nasal cannula. All this time she has had a feeding tube. They changed it to a nasal feeding tube because she pulled the other out do many times. About 4 weeks ago they started letting my daughter bottle feed but the baby really struggles because she has an aversion to any thing in her mouth. My poor daughter gas continued to pump everyday every 3 hours but she has never gotten to try to nurse her baby but 2 times and no one helped her to try. The nurses are useless at both hospitals when it comes to helping my daughter to get the baby to nurse or bottle feed. They shrug their shoulders and say they don't know what to do. My daughter is exhausted and so weary. She has been staying with her baby at the hospital for 6 months and 2 weeks with no end in sight. The doctors refuse to remove the feeding tube and they have this poor baby so over weight. At 21/2 months adjusted age she weights over 12 lbs. She spits up and vomits because they over feed her. If she leaves one drop of formula when they let my daughter bottle feed then theh gjve her the full feeding in her tube!! She has begged.the doctors to take the tube out to see if she will
do better bottle feeding but they refuse. This to me is child abuse. These doctors follow the same protocol no matter the circumstances of the baby. Every one gets feed every 3 hours around the clock and every baby gets fortified formula. My daughter pleaded with the doctors for last 3 months to change the baby's formula because she had every symptom of a milk allergy. They refused to change her formula or test her to see if she had a milk allergy. Instead they did reflux tests and the results were no one sign of reflux issues!! It was the formula and the feeding tube that are causing all her problems. Just a week ago dr changed her yo non milk formula and within 2 days the diarrhea, has, rash, restlessness all went away.
Why do these doctors think they know it all? I guess medical schools are teaching the same all over the US. How sad these innocent babies that have fought so hard to live and over come so many obstacles have to suffer under these arrogant people because they do not want any one to challenge them!! So my little precious granddaughter will remain in the hospital until these morons figure if out and so my daughter and granddaughter will spend another holiday (My daughter's first Mothers Day and her 26th birthday) in the hospital alone because wirh the corona virus no one can visit and only one parent is allowed every 24 hours!!!!

Mia
9/21/2020 02:55:33 am

I’m very sorry to read about the struggle your daughter has been thru! God bless

Mariah
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.

Alexandria
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?

Devon
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

Ben
6/28/2018 07:30:27 pm

Devon what was the outcome? Thanks

Debra Mctiernan link
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


My granddaughter was born 6 weeks ago at 34 weeks gestational. she was born 6lbs 3oz and now weighs 8lbs 4 oz yet the tube is still in her nose and the drs refuse to let her go home until she is able to eat 80% of every feeding without it. problem is they are constantly increasing the amount she eats because of her weight gain. it seems like the goalpost is forever moving and we have no idea how to engage the medical staff in a sensible alternative as we are told that as we are not neonatologists, we need to leave these considerations to the experts....any assistance would be very much appreciated.

Allison
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.

Sarah
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.

Matthew
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...

Claudia Foster
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

Dani link
8/20/2020 10:40:34 am

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.

Kayleigh Nolan
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

Tabia
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


Comments are closed.

    Archives

    September 2022
    August 2022
    October 2021
    September 2018
    September 2017
    June 2017
    September 2016
    August 2016
    March 2016
    January 2016
    November 2015
    September 2015
    July 2015
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014

    Categories

    All

    RSS Feed

Project Sweet Peas is a registered 501(c)3 nonprofit organization incorporated in the state of Pennsylvania.
​FEIN # 27-3679594


www.projectsweetpeas.com
Copyright © 2021 | Project Sweet Peas | 45 Boylston Ave, Warwick, RI | nicuawareness@projectsweetpeas.com
  • Home
  • About
    • History
    • Blog
    • Contact
  • GET INVOLVED
    • Start a Fundraiser
    • Supporter Toolkit
    • Partner Toolkit
    • Become a Sponsor
    • Become a Nonprofit Partner
    • Initiative Days
    • Random Acts of Kindness
    • Share Your Story
    • Remembrance Day
  • Nurture Award
  • Partners
  • Give
  • Resources
    • Disorder Resources
    • NICU Resources
    • Regional NICU Resources
    • For Health Professionals
  • Honoring all NICU babies