Marsha Dunn Klein
MEd, OTR/L
Ellen Duperret, RD
Jude Trautlein, RD
(Reprinted with permission from Exceptional
Parent Magazine Vol 36 Issue 2)
Many families
who nourish their children by feeding tube are asking if they can
put “real “ food into the tube. Can they make homemade
food to use with or instead of the commercial formula? These families
want to nurture their tube fed children with meals just like their
orally fed children. Many parents are providing some type of homemade
formula successfully by tube every day.
What
is homemade formula?
Homemade blended formula (HBF) is specially prepared food for the
child who receives nutrition by tube. It can be a combination of
commercial formula and pureed foods, or only a mixture of only pureed
food in a recipe especially designed for the individual child’s
growth and nutritional needs. The term “homemade” reminds
us of the loving parental effort involved in making the formula.
Why
HBF?
Parents tell us they enjoy the relationship established through
feeding their babies. That close time of togetherness sometimes
gets lost in the procedural aspects of feeding children with tubes.
Many parents are striving to regain that relationship. They feed
their other children with food prepared with love and they want
to provide that same loving preparation for their tube fed child.
Research
indicates that we all benefit from a varied diet for optimum nutrition.
Commercial formula meets the energy and nutrient needs for the child,
but long term use does not provide for dietary diversity.
Families
often describe very positive results when they introduced some type
of HBF. The increased fiber offered in the HBF allows many children
to have improved bowel movements. Parents describe improved growth,
improved volume tolerance, and improved interest in tasting foods
orally. Parents who provide this homemade food are pleased to be having
input into their child’s diet and to be decisions about nutritional
variation.
How
complicated is it?
Making HBF can be simple, or complicated depending on the family.
Homemade formula can be as simple as adding an ounce or two of baby
food puree to the commercial formula, or it can be as labor intensive
as blending a pot roast with the trimmings! Some families happily
use commercial baby food once or twice a day with formula, and others
eliminate the commercial formula completely. It’s the family’s
choice, and it depends on how much time and effort the parents want
to put into the process, coupled with the child’s health and
tolerance.
Get
support
All children need regular growth monitoring and adequate nutrition
. A child receiving tube feedings needs the support of a Registered
Dietitian (RD) and Primary Care Physician (PCP). Many RD’s and
physicians, however, have little experience with HBF and are not yet
comfortable because commercial formula has become the standard. All
around the country, it is parents who are asking their teams, why
not? Together parents and MEdical teams are learning about HBF and
discovering very positive results.
Things
to consider
When considering HBF, parents rely on the knowledge they have about
feeding orally fed children. Start with what you know about orally
fed children.
Children
drink breast milk or formula and transition slowly to purees and table
foods.
Making
the transition to any type of homemade food needs to be a slow one,
monitoring the child carefully for tolerance and growth. We do not
give orally fed children formula or breast milk one day and then completely
change to solids the next, nor should we change tube fed children
to HBF all at once.
Children
are introduced to one new food at a time to rule out allergies and
rule in tolerance.
HBF’s
success relies on a gradual introductions of foods, one at a time
with at least a 3-5 day trial before adding another new food.
Oral
eaters are usually first introduced to fortified cereals, then pureed
vegetables and fruits. With good tolerance and increased interest,
the diet expands.
HBF
food choices tend to follow the same guidelines. As children get older,
they can be offered beans, potatoes, meats and a variety of other
foods that orally fed children would eat.
Orally
fed children have some control over meal sizes.
Parents watch their children carefully to provide volumes that are
comfortable.
When
tube feedings are offered, parents can watch for cues that the child
is full. Over filling little tummies, or giving the food too quickly
can lead to gagging, retching or vomiting.
Presentation
of foods changes for orally fed babies as their skills increase. They
move from breast and bottles to cups, finger feeding, spoons, forks
and straws.
The
method of presentation for HBF is more complicated. HBF is ideally
offered through a syringe in a bolus “meal” at a “mealtime”.
HBF mixtures tend to be too thick to easily flow through a gravity
drip or pump feeding system. Additionally, it is not safe to hang
pureed food in a bag at room temperature the several hours that may
be needed for an extended drip feeding.
Food
for all children must be prepared under sanitary conditions to prevent
food contamination.
HBF must also
be carefully prepared to ensure food safety. Washing hands and food
surfaces is of the utmost importance with HBF.
Getting
started
Families generally start by adding small amounts of commercial baby
food to their child’s formula in a bolus, one time per day.
This can be changed over time to add variety or increase the volume
of the food. Later, when families want to puree home cooked meals,
a heavy duty blender, such as a Vitamin™ is needed to enable
the food to be completely pureed. After a variety of foods have
been introduced, formula may be replaced by pureed foods. At this
point the help of a Registered Dietitian is needed to ensure the
child is meeting his energy and nutrient needs.
HBF
can be used successfully to allow children with tubes to grow and
thrive. It is not the answer for all children and families, but for
those who are excited by the possibilities, our hope is to inspire
discussions with their child’s health care team.