CHILDREN WITH FEEDING TUBES
PART 3:
MAKING THE TRANSITION TO ORAL FEEDINGWhen is a child ready to transition to
oral feeding?
It is important to remember that there is a continuum
from non-oral feeding to oral feeding. It is rarely an
“either-or” situation, but is a process. There
is a great deal of variation in how children and families
respond to tube feeding and the transition journey
towards oral feeding. Some children require total
tube-feedings with no oral-feedings. Some progress to
taking small snacks orally. Some children can eat solids
but receive all liquids by tube because of the risk of
aspiration. Some children eat by mouth but need extra
calories.
by tube to grow. Other children move to oral feeding
demonstrating the ability to grow and thrive without the
tube. Where children begin and how they move on this
continuum depends on many factors. Long-term difficulties
in moving toward oral feeding are rarely caused by a
single factor, but rather by a complex mixture of
factors. In a comprehensive oral treatment program, the
child directs the approach. Therapy can provide
experiences and opportunities, but the child will let us
know how fast to travel and what direction to go on this
journey.
Are there specific readiness factors
that should be considered?
There are a number of factors that must be considered
when any transition towards oral feeding is contemplated.
These will influence when the child is ready to take a
greater variety of foods in larger amounts.
- Resolution of the Original Problems
We must know whether the
medical conditions that led to tube feeding in the
first place are resolved. If, for example, the child
had the tube placed due to aspiration, is that still
present? If fatigue required supplemental feedings
due to a cardiac problem, has the cardiac condition
been resolved? Did the necessary surgeries occur? If
these original conditions continue to be a problem
for the child, an active focus on transitioning to
oral feeding is usually inappropriate.
- Overall Health of the Child
The transition toward oral
feeding typically involves some reduction in
tube-feedings. The assumption is made that the child
will begin to feel hunger and will make up the
difference in calories by eating more orally.
However, this may not happen immediately. Even when
children are ready for this step, it may take time
for the child to understand what is happening and
increase oral intake. If children are unwell, they
may respond by getting ill or by loosing too much
weight. When they are not feeling well, they may lack
the internal drive and motivation to move toward oral
feeding. Thus before moving toward a tube-weaning
program we must ask many health-related questions.
The child should be in good health over an extended
period of time with good growth patterns on tube
feedings.
Many children are initially
given feeding tubes because they could not swallow
safely. They aspirated food or liquid or were at high
risk for aspiration. As their prerequisite skills for
oral feeding improve, their ability to swallow safely
often improves as well. They begin to eat small
amounts with good coordination and without any
external signs that they are aspirating. This,
however, is quite different from taking full meals
orally. Some children can handle small amounts of
food and liquid, even with some aspiration, safely.
These same children may be silent aspirators or may
become more uncoordinated and loose their margin of
swallowing safety when they must take larger amounts
or eat for longer periods of time. If there has been
any prior history of aspiration or a
videofluoroscopic swallow study that showed risk of
aspiration, the swallow study should be repeated
before encouraging larger amounts and varieties of
food or liquid. Even if the child has not had a
history of swallowing difficulties it may be
appropriate to refer for a videofluoroscopic
swallowing study when larger amounts of food are
offered.
Clearly the child's oral
skills play a major role in determining readiness to
transition to oral feeding. When they are limited or
cannot be sustained over a period of 30-45 minutes,
children often resist moving into prolonged periods
of oral feeding.
Hunger provides the internal
regulation for eating orally. Many tube-fed children
have missed the gastrointestinal experiences that
create contrasting sensations of hunger and
satiation. Before moving toward larger amounts of
food and weaning from the tube the child should e
able to take bolus tube feedings comfortably. These
should be given on a feeding schedule of three larger
meals and two smaller snack meals. The child should
have an initial sense of hunger and the awareness
that the mouth and food eaten orally play a major
role in reducing hunger.
Children progress toward
oral feeding when they are interested in this way of
taking in food and when they are ready. Readiness is
an internal phenomenon. Adults can provide the
encouragement and introduce children to the
experiences that seem to promote readiness. However,
readiness itself is perceived and directed by
children, not by adults. It is important for
therapists and parents to look for and encourage any
signs that the child is interested in food and in
eating. Interaction with foods and liquids stimulates
enjoyment and involvement. Children usually reach for
food or the spoon and try to put them in the mouth.
Some children are not interested in eating because
they do not feel well or experience the discomfort of
gastroesophageal reflux or retching every time they
eat orally or by tube. Often the parent or therapist
wants the child to eat orally when the child has very
little internal interest in eating.
Helping a child make the
transition from tube feeding to oral feeding takes
time and commitment from parents. It is important to
know whether the parent really is ready for their
child to move towards oral feeding. Parents become
the team leaders in this process. Much of the effort
will rest on their shoulders. They need to understand
all of the issues involved in transitioning the child
to oral feedings and have the patience to let the
child lead the pace toward eating.
What progressions are used to move
children toward oral feedings?
Moving from non-food to food
situations must be done slowly and with respect for
the child's needs and abilities. At first, a taste
may be presented on the finger or in drops of water.
The intensity of the taste or the quantity of liquid
is gradually increased, the child's response is
observed carefully, and additional challenges are
provided only when the child shows readiness. A wide
exploration of taste, and texture should continue to
be combined with extensive oral play. Small drops of
liquid are similar in taste and amount to the saliva
that a child may already be able to swallow
successfully. When it is gradually introduced with
mouth play to develop tongue and lip movement, it may
be swallowed with relative ease. Gradually working
progressively with cotton swabs, a medicine dropper,
a small syringe, an infant spoon, and a cup can
increase the amount. Liquid, however, may pose a
major problem for infants and children who have
substantial difficulties in coordinating breathing
and swallowing. Some children need to start with a
pureed consistency.
Pureed foods appear to be
easier for some children who need stronger sensory
cues of weight, texture, and taste in order to
organize the sensorimotor response in moving the food
to the back of the mouth. The slightly thicker,
heavier consistency doesn't flow out of control as
rapidly as does liquid. Because of the slightly
greater time and control allowed by the thicker food
or a thickened liquid, the suckle-swallow is
improved. Other children appear to need the
consistency of the semi-solid foods followed by drops
of liquid to clear the back of the tongue and
pharynx.
The child should continue to
enjoy the taste and texture transition to purees if
they are presented carefully. There is a tendency for
infants to stop the rhythmical tongue movements and
revert to old patterns when food is initially
introduced by spoon. Panic, disorganized mouth
movements, and protective tongue retraction may
occur. In some situations, the child has had previous
negative experiences with the spoon that can trigger
fear and protective responses. Consider introducing
the purees on the child's finger, a familiar mouth
toy or pacifier. It is critical that the emphasis be
placed on sustaining a rhythmical suckle movement of
the tongue. If this is lost, the amount of food
presented on the tongue should be reduced or the food
thinned down until the rhythmical movement returns.
When the child becomes fearful, old patterns of head
extension, body arching and overall incoordination
may appear, increasing the risk of choking and
aspiration.
Children will show their
preferences in how they make taste and texture
transitions. Some prefer strong flavors, and some
prefer diluted. Some prefer to move from tiny amounts
of thin liquids to larger amounts of the liquid. They
may then move toward nectar consistencies and then
expand their skills with different feeding utensils
such as a bottle, cup or straw. Others move from
liquid tastes to purees and gradually on to solid
foods. Still others quickly leap from liquid tastes
to crumbs and “meltable foods” then on to
more challenging solids, refusing any offerings of
wet foods. Children show their preferences and let us
know their readiness for new challenges.
Parents often ask whether an
infant should be placed on the bottle or breast if
initial feeding difficulties required that
tube-feedings be given. Much depends on the
strengths, specific problems, and age of the baby. If
a rhythmical sucking pattern is present and tongue
retraction does not increase when the nipple is
inserted, feeding from the bottle or breast may be a
realistic goal. A rhythmical suckle on a finger or on
a thin cloth or sponge dipped in water, breast milk
or formula can prepare the infant for bottle- or
breast-feeding. The Hazelbaker™ FingerFeeder*
can be used to feed the baby off the adult finger. A
soft preemie nipple may be used to obtain an easier
suck. If the infant is able to continue a rhythmical
suck- swallow without excessive liquid loss or
choking, a juice nipple with a slightly larger hole,
a Haberman™ feeder* or a Supplemental Nursing
System* for breast-feeding, may be used.
Many babies move directly to
cup drinking bypassing the nursing or bottle- feeding
stage. The age of the child and the severity of the
oral-motor difficulties will influence the decision.
Some babies have severe sensitivities to the touch of
the nipple in the mouth. Some become disorganized
with the presentation of the nipple with resulting
tongue retraction or disorganized movement. Some
infants are not able to maintain the energy level and
organization need for nipple feeding. Cup drinking
for these children can be more appropriate.
Still other babies and young
children show their greatest eating skills with the
spoon. Especially when they learn to use an active
movement of the lips to draw food into the mouth from
the spoon, they seem able to control the amount and
movement of food or liquid more efficiently. These
children may bypass the bottle, breast and cup stages
initially and take all of solid foods and a small
amount of liquids from the spoon. They may continue
to receive larger amounts of liquid by tube until
they have developed the ability to coordinate their
sucking-swallowing-breathing pattern for a larger
volume of thin or thick liquids.
When there are strong signs that a child may be
developing greater interest in eating and moving towards oral feeding, the
child must move from the lap, floor or bed to the
family table for tube-feeding during regular
mealtimes. This step can be built into the initial
stages of the program for most children. It builds an
association between the satiation of hunger provided
by the tube-feedings and the sights and smells of a
regular meal within the social context of a family
mealtime. The child may be given spoons, bowls, or
food on the tray to encourage feeding play. Children
who show interest in tastes can be given food
and liquid to taste during the family mealtime. The
emphasis is on the positive mealtime experience and
mealtime imitation rather than on the quantity of
food.
- Dietary Preparations for Oral Feedings
Dietary support should
parallel efforts to prepare the mouth for oral
feeding. Increasing nutritional variation in the tube
diet may help prepare the child's mouth, nose and
gastrointestinal system for new foods. When only
formula is given by tube and cereal, fruit,
vegetables, and juices are only offered orally,
problems can develop. Children with a genetic
predisposition toward allergy may develop allergic
triggers from repeated challenges of the food sources
in a formula that is given at every meal. These
children may develop allergic or hypersensitive
reactions to new foods that are offered by mouth.
These reactions can trigger increased mucus,
abdominal discomfort or pain, headache, or feelings
of irritability and unwellness. The child may
associate the oral feedings with discomfort and
refuse to eat. If individual foods are pureed and
diluted with water and given occasionally by tube,
allergic or hypersensitive responses can be
identified before the child has experienced them
orally.
If the child has high
caloric needs and is able to take only tube-feedings,
it may be difficult to provide adequate non-formula
calories in a volume that can be tolerated by tube.
In that case, non-formula meals via the tube may be
deferred until stomach capacity is greater and a
larger diameter tube can be inserted, which would
require less dilution of the food. However,
mini-meals of different foods can be given by tube
and the child's reaction can be observed. Because of
the immature digestive system, pureed foods should
not be given before an infant is 4-months old. When
they are added by tube, new foods should be added at
three- or four-day intervals in the same way new
foods are added by mouth in the typically developing
infant. Consult the child's physician or a dietitian
to determine the best diet when the child is ready to
begin the transition to oral foods.
Both learning to enjoy new
foods and a healthy diet are extremely important in
helping children move from tube-feedings to
oral-feedings. It is very easy to get into the trap
of giving children only sweet tastes and junk foods
because they may be more interested in these foods.
In our experience this can become a big trap.
Children continue to be drawn to the types of food
that we give them as they are learning to eat. If we
really want children to be capable of supporting
their body's nutritional needs orally, we need to
think in terms of healthy foods and dietary diversity
from the very beginning. The focus in therapy should
help them learn to accept and enjoy small tastes of a
wide variety of foods. This focus should not
emphasize increasing the amount of one or two foods.
It is important to begin with the types of taste that
are easiest for the child, but therapists and parents
must help the child move toward new foods and new
tastes from the very beginning. For some children
this may be simply changing the brand of food so that
the change is very small. However the overall goal is
to develop a wide variety of tastes that the child
will like and accept. It often is hard for families
to develop a long-range view when they want their
child to eat now. But it is really worth it in the
end. We can start with the small steps in the
beginning that take us to what we really want–
children who are happy, comfortable and
well-nourished as oral-feeders.
A successful transition to
oral feeding depends on the child's association of
oral-feeding with hunger and its reduction, and on
the child's physical ability to take some food
orally. In preparation for the transition to oral
feedings, the tube-feeding schedule can be modified
to promote both hunger and a more normal mealtime
routine. Hunger can and should be used as an ally in
encouraging the child to take more by mouth.
Tube-feedings can be adjusted so that their volume
and timing is similar to an oral feeding pattern of
three large meals and two smaller snack meals per
day. When smaller, more frequent tube-feedings are
given or a continuous drip-feeding pattern is used,
children never feel the sensations of hunger or
satiation. Their system is totally unprepared for the
internal cues that create the needed motivation to
accept oral-feedings. Some children have been fed all
of their calories by continuous drip feedings at
night. Parents and professionals hope that they will
be hungrier during the day. This works for some
children but not for others. Some children have been
tube-fed for so long on such as schedule that they do
not identify hunger at all. A daytime bolus-feeding
schedule may more readily provide the child with the
contrasting sensations of satiation and hunger that
can be more easily associated with food and eating.
When a hunger/satiation
pattern has been established, parents should identify
the time of day when the child's energy level is the
highest and mood is the best. Most parents notice
that some meals are consistently better for their
child. They can identify when the child seems hungry and
most willing to take on the challenge of an oral
meal.
Once the child shows
interest and skill in eating foods and the parents
can identify optimum times for mealtime challenges,
hunger can be used creatively to enhance the child's
motivation in eating. There are many ways to
rearrange the feeding schedule and the calories. The
decisions may depend on the child's hunger, interest
in foods, and stomach capacity. It also depends on
the family routine. The child's growth, nutrition,
and fluid needs must be closely watched. The
physician or dietitian usually works closely with the
family and feeding therapist during this transition.
A time limit of fifteen to
thirty minutes should be set for oral feedings.
During this period, during which the child is allowed
to eat as much as desired. The remainder of the meal
then would be given by tube. The child should enjoy
the social interactions, mealtime conversations and
mealtime atmosphere. There should be encouragement
and support without coercion, force or pressure to
eat. The parents need to know that the tube is still
there as a nutritional support. Whatever the child
does not take by mouth can easily be given by tube.
Too many transitions to oral
feeding bog down at this point as prematurely
enthusiastic parents and therapists put direct or
indirect pressure on the child to eat more. If
calories are decreased too drastically early in the
weaning process, stress will increase and the program
can fail. Parents want their children to remain
healthy and not lose weight. A rapid reduction in
calories can put too much pressure on the parents to
“help” the child take in enough food. This,
in turn, can put pressure on the child to eat more
than is comfortable. Weaning a child from a feeding
tube is a process, not an end destination. It can
often be a slow process. The tube is there to help
until the child is very capable and willing to take
in sufficient food by mouth. Parents and therapist must
listen to the child and let the child set the pace.
Health, good growth, and positive mealtime
experiences are the most important goals.
- Removing the Feeding Tube
An indwelling feeding tube
(e.g. gastrostomy tube) should remain in place
following a complete transition to oral feedings.
Oral-feedings should become fully stabilized and the
child's needs for liquids and solids should be
satisfied orally even in time of illness before the
tube is removed and the insertion closed. The
premature removal of the tube may create excessively
long meals for the child and feeder and may introduce
the possibility of malnutrition or failure to thrive,
especially during times of illness.
What is the role of maturation?
Time and maturation can be important allies for many
infants in developing better feeding patterns. This is
primarily related to changes in anatomical structures and
reduction of primary respiratory problems that occur
during the first year of life. When feeding difficulties
are increased by a disproportionately small jaw or by
difficulty in maintaining the size of the pharyngeal
airway (as in micrognathia or Pierre Robin Syndrome),
anatomical changes will occur over time. The downward and
forward growth of the mandible and the elongation of the
pharynx, which begin at four to six months can play a
positive role. These anatomical changes increase the
pharyngeal airspace for breathing and provide a larger
oral area for tongue movement, thus reducing stress on
the respiratory and feeding systems. Poor health related
to respiratory or cardiac difficulties may be reduced as
the infant matures. With greater ease of breathing and
greater energy, progress in oral feeding may become
easier.
The contribution of time and maturation to the process
does not mean that referral for treatment and an
intervention program should not begin during the first
year. Emphasis during the initial stage of treatment
should be placed on developing postural control, on
communication and interaction during nonoral feedings, on
normalization of oral sensitivity, and on oral
exploration.
What is the role of change?
The role of change in human behavior is important to
recall when working with young children. As the infant
matures, the sensory feedback from the restrictive,
nonfeeding patterns becomes familiar and is incorporated
into the developing body image and self- concept. When
change becomes possible through therapeutic handling and
stimulation, it is unfamiliar and may be frightening.
There is a tendency to cling to the old pattern. This is
particularly true when the habitual pattern included
compensations that enhanced survival. Thus, a child who
choked during swallowing may find it difficult to use a
suckling response to draw liquid into the pharynx.
Another child may resist swallowing semi-solid foods,
knowing that swallowing produced a sense of suffocation
at a time when respiratory abilities were stressed by
oral feeding. These old habits and perceptions must be
acknowledged, and the therapist must resist pushing the
child into new behaviors. The therapist is a guide who
introduces new possibilities. The child is encouraged to
explore these new ways of being. If the changes are
presented as something new and interesting, they may be
accepted when the child is ready because there is no
battle and no image to be preserved. Therapists
frequently strive for repeated gains and changes without
pause. This often pushes the infant or child to the point
where there may be a functional retreat into less mature
but familiar behaviors. Natural plateaus must be allowed
and encouraged. The child needs these pauses to stabilize
a newly learned behavior before moving on.
 Suzanne
Evans Morris, Ph.D.
Speech-Language Pathologist
New Visions
1124 Roberts Mountain Road
Faber, Virginia 22938
(434)361-2285
This paper is a working
draft and multiple copies may not be reproduced
without prior written permission of the author
© Suzanne Evans Morris, 2000 All Rights Reserved
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