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

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!

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Written by Marguerite Dunitz-Scheer, MD of notube.