Your baby has a feeding tube, which was placed as a temporary measure. But it now looks like staying for the long term, because while he’s ready to feed orally, he refuses to. Read on to learn why some babies experience difficulty weaning from tube feedings.
Why a plan is necessary
Feeding tubes are lifelines for babies who are unable to safely feed orally, who are too weak to ingest sufficient calories, or who are unable to keep down sufficient nutrients to sustain healthy growth.
Some babies may need feeding tube support on a temporary basis - until they mature enough to feed orally or until they recover from an illness or surgery. Others may require tube feeding indefinitely. While it’s essential that a baby receives the level of support that he needs to grow healthy and strong, the reality is that many babies are tube-fed longer than medically indicated owing to circumstances, rather than need.
When a baby receives nutrition through a feeding tube, the transition to oral feeding can be thwarted by unexpected challenges. There are a number of barriers that can hinder a baby’s progression or return to feeding orally. These will require effective planning to navigate. Failure to address these barriers may result in a baby being tube-fed for weeks, months or in some cases years longer than originally expected. This article describes a number of often-overlooked barriers.
(See Tube Feeding Baby for advantages and disadvantages of tube feedings.)
An effective and timely weaning plan is important when tube feeding is required on a temporary basis. To be effective, a weaning plan must take into consideration all factors that might prevent a baby from accepting oral feedings (as described further below). A weaning plan also needs to be timely. The longer a child is tube fed, the greater the challenges involved in weaning.
Sadly, many babies and children, who for varied reasons once required tube feeding on a temporary basis, become tube-dependent because of the absence of an effective weaning plan. Without and effective plan, early weaning from tube feeds is unlikely, and the child may continue to be tube fed for much longer than medically indicated.
In many cases there is no tube weaning plan in place for the various reasons, including:
- The child is not expected to feed orally.
- The child is expected to self-wean when ready. [This is unlikely to occur.]
- Some health professionals place greater importance on making sure the baby gains sufficient weight than on the value of feeding orally.
- Tube dependence is often not recognized as a complication by health professionals.
Barriers to tube weaning
A tiny percentage of babies will require tube feeding over the long term, but most tube-fed babies are expected to transition to oral feeding once feeding support is no longer required from a developmental or medical perspective. Unfortunately, the transition from tube to oral feedings is not always a smooth progression.
Some babies are prevented from making a timely switch from tube to oral feeding for one or more of the following reasons.
- Lack of opportunity to develop feeding skills.
- Lack of motivation to feed orally.
- Lack of understanding of what to do about hunger.
- Desensitization to hunger cues.
- Feeding aversion.
- Tube dependence.
1. Lack of opportunity to develop feeding skills
A tube-fed baby could be physically capable of safely feeding orally and yet lack opportunity to develop the necessary oral-motor skills that support oral feeding. There are sensitive periods in a baby’s development where learning feeding and eating skills is physiologically most easily achieved. For example…
33 weeks gestation to 3-4 months of age (or corrected age) is a sensitive period for the development of breastfeeding and bottle-feeding skills. Infant reflexes, such as the sucking reflex, support babies to learn the skills that enable oral feeding. The sucking reflex is triggered by pressure on the roof of baby’s mouth. The presence of the sucking reflex enables sucking to occur automatically, and in doing so baby gradually learns the skills required to suck voluntarily. Skills that will be necessary him to feed once his sucking reflex has disappeared, generally around to age of 3 to 4 months.
4 to 6 months is a sensitive period for learning to eat solid foods. It’s around this age that babies tend to display interest in eating solid foods. If the introduction of solids occurs at a time when baby is interested, this can help prevent the problem of food refusal later on.
4 to 10 months is a critical time for acceptance of new tastes and textures. After 10 months of age, babies generally become wary of new things including new foods. Children who are introduced to solids late tend to have a narrower diet breadth throughout childhood. The delayed introduction of lumpy solids can lead to problems of acceptance in later childhood.
While a tube-fed baby may miss out on opportunities to feed orally during one or more of these sensitive developmental periods, it’s possible for him to learn the necessary skills, but it will be more challenging to do so.
2. Lack of motivation to feed orally
Offering a baby oral feedings is essential in order to support him to develop oral feeding skills, but offering is not enough to encourage acceptance if baby lacks motivation to feed orally.
Hunger is the primary motivator for us to eat. As adults, we also eat for pleasure, but babies are motivated to eat because of hunger. When a baby’s nutritional needs are met though a feeding tube, this can negate his instinctual desire to eat for hunger.
The offering of oral feedings before tube feedings doesn’t necessarily mean a baby will be hungry enough to want to eat.
A baby’s appetite is regulated by his circadian rhythms (biological rhythms or 24-hour internal body clock). There are a number of reasons why a baby might not be hungry at a time we expect. For example:
- An inappropriate feeding pattern - one that does not harmonize with baby’s natural biological rhythms - may mean he’s not hungry at the time oral feeds are offered.
- Overfeeding – provides more calories than the baby requires for growth and energy needs at his current stage of development, and as such will suppress his appetite for longer periods of time.
- Nighttime feedings that continue beyond the baby’s developmental need to feed at night will decrease appetite during the day, especially the mornings.
Babies’ nutritional needs are constantly changing in relation to their growth and development. When a baby is tube-fed over a period of weeks or months, the feeding regime may require multiple changes to keep pace with his changing nutritional needs. Failure to keep pace could result in continued resistance to oral feeding; or in the case of combined oral and tube feeding, a progressive decline in oral intake.
3. Lack of understanding of what to do about hunger
A baby could have the skill to feed orally, he may be hungry, and yet refuse to feed because he has not learned to connect oral feeding with the feeling of satisfaction. Or he may have been tube fed for so long that he has forgotten.
Many tube-fed babies are fed so regularly that they don’t get the chance to feel hungry. Once they given the opportunity, they become irritable owing to the gnawing pangs of hunger and yet don’t feed orally because they either don’t understand what these sensations mean (or have forgotten) or don’t know what to do about it. They fuss or cry in hunger and cry even more when a bottle or food is placed into their mouth.
4. Desensitized to hunger cues
Many parents suspect their baby is unaware of hunger cues when they observe that even after 8 to 12 hours or longer without food their baby does not fuss to indicate hunger or appear upset. Unlike the baby who fusses due to hunger but is unaware of what to do to about it (as described above), when a baby is desensitized to his hunger cues he appears to be oblivious to the sensation of hunger.
When you consider the experiences of a tube fed baby it’s not surprising that he might become insensitive to his hunger cues. Tube feeding overrides a baby’s innate ability to self-regulate his dietary intake. While tube fed, a baby is the passive recipient of nutrition. He does need to act upon the sensations of hunger or actively fed. He may be fed at specific times irrespective of whether he’s hungry or not. He does not need to indicate when he’s full, and even if he did, his behavioral cues are likely to be overlooked if he has not yet had the recommended amount. He may not get opportunities to make a connection between a sensation and corresponding action on his part because there is no action required on his part when he is tube fed.
I suspect the difference between a tube-fed baby who fusses owing to hunger and one that appears to be oblivious to the sensation of hunger, is partially related to the baby’s temperament type. The good news is that neurologically normal babies can regain sensitivity to hunger cues.
5. Feeding or oral aversion
A baby (or child) could have developed the skills necessary to feed orally; he could be given sufficient time to experience hunger; and yet strongly oppose oral feedings because of a feeding or oral aversion. [A feeding aversion is specific to feeding, whereas an oral aversion includes anything coming into contact with baby’s mouth.]
Unlike the baby who is unaware what to do about his feelings of hunger, a baby with a feeding aversion fiercely opposes feeding. He displays an intense emotional response to feedings or meal times by crying, screaming, back arching (to distance himself), refusing to sit or by trying to climb out of his high chair, and by gagging, retching and vomiting if the parent puts food into his mouth.
A baby (or child) can develop a behavioral feeding aversion when he has learned to associate feeding with unpleasant or stressful experiences. Which typically occurs if he has been repeatedly pressured to feed. Once an aversion has developed he may then refuse to feed despite feelings of hunger. [However, he might feed in a sleepy state, a time when he’s psychologically less aware.] A feeding aversion can lead to poor growth, which in some cases is the reason the baby required tube feeding in the first place. While successful in resolving growth concerns, a feeding tube may fail to address the underlying cause of baby’s aversive feeding behavior and hence he may continue to intensely oppose oral feeding attempts. A positive feeding relationship needs to be re-established before a baby (or child) will willingly feed orally.
Medical problems such as gastro-esophageal reflux disease (GERD) or food allergies have the potential to cause pain during feeding, which the baby learns to link with the act of feeding, and in turn causes him to develop an aversion to feeding. If one of these conditions is responsible, the situation will resolve with appropriate medications and/or dietary changes.
Invasive procedures such as prolonged ventilation, suctioning and tube-insertion, can cause a baby to develop an oral aversion, where he then links anything coming into contact with his face or mouth with these unpleasant, stressful, painful experiences. This will include feeding equipment, but is not restricted to feeding.
The cause of baby’s aversive feeding behavior must be identified and treated or managed before successful tube weaning can occur. While medical causes are generally considered, behavioral reasons for feeding aversion are commonly overlooked.
6. Tube dependency
The condition of tube dependency can be defined as active refusal to eat and drink or lack of will to transition to oral feeding after a period of tube feeding following repeated opportunities to feed orally. A tube-dependent child remains reliant on tube feeding even though his medical condition and developmental potential would allow the transition to oral feeding.
Tube dependency is recognized as an unintended consequence of long-term tube feeding in babies and young children. Basically, tube dependence involves one or more of the behavioral factors already described that prevent a tube-fed baby from feeding orally.
Tube dependence is a difficult situation to turn around. Prevention is better than cure when it comes to tube dependence. It’s not possible to predict in advance if child will become dependent or how long this might take. All health professionals would agree that the sooner a child could safely be weaned from tube feedings the better.
Some babies are mistakenly labeled as ‘tube-dependent’ and hence continue to be tube fed over the long term when in reality the problem is lack of an effective weaning plan that takes into consideration all above-mentioned barriers to tube weaning.
Written by Rowena Bennett.
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How we can help!
Our health professionals have been successful in providing a number of parents of tube-fed babies with an effective weaning plan. (See our testimonials.) The majority of these babies where already under the care of an infant feeding team comprising of pediatrician, dietician, speech pathologist and/or occupational therapist, but the health professionals involved had unknowingly overlooked and therefore failed to address one or more of the behavioral factors that impede the baby’s transition to oral feeding.
Obviously, it’s not possible for us to provide an effective weaning plan for all tube-fed babies. Much depends on the underlying reason for a baby’s continued reliance on tube feeding; whether it is medically warranted or not. We are very specific about the cases we accept.
- The child is less than 2 years of age.
- The child has been medically cleared to feed or eat orally.
- The child has demonstrated he has the physical ability feed, drink or eat safely (even if its only a little) either recently or in the past.