CARING FOR A CHILD:
FEEDING & DIET ISSUES
General Feeding Issues
When a child has a heart disease like
cardiomyopathy, they may not gain weight as rapidly as
other children their age. The most common reason for slow
growth is the child's inability to take in sufficient calories
and nutrients while the body is trying to compensate for
the heart's increased pumping. Other reasons include poor
appetite resulting from rapid breathing and fatigue, frequent
respiratory infections (bronchitis, pneumonia) and poor
absorption of nutrients from the digestive tract. Sometimes
a child temporarily loses his/her appetite after hospitalization
or after a new medication has been prescribed. These factors
combined with hereditary conditions and the disease's severity
can all affect a child's growth.
The challenge in feeding children with cardiomyopathy is to provide more calories
than the average child requires for growth in an appropriate and feasible manner.
You may notice that compared to healthy children, your child's intake of liquid
or food may be much less. It is normal to be concerned about your child's slow
weight gain especially when it has an effect on their development, but it is
important to refrain from "forcing" your child to eat. Although difficult,
try to remain flexible when selecting or initiating feeding methods and schedules.
Maintain positive eating habits by letting your child decide when he or she
is full. If necessary, you can offer smaller, more frequent meals, increase
the calories per feeding and/or add nutritional supplements.
If your child's rate of growth drops dramatically over a course of a few weeks,
contact your child's cardiologist to determine whether his/her heart condition
is contributing to the loss of appetite. You may need to contact a feeding
specialist if you suspect that poor eating habits are due to negative associations
with eating or hospitalization. Tube feeding may be a good temporary tactic
to increase your child's weight while he/she relearns positive eating skills.
Breastfeeding And Bottle Feeding
Babies with cardiomyopathy can be breastfed
or bottle fed but they may not be able to tolerate a large
volume of milk. Since babies with heart conditions tend
to tire quickly during feedings, frequent "on-demand" feedings
tend to work best. On average, an infant should gain about
one ounce per day from birth to 3 months, and one-half
per day from three months to one year. Consistent weight
gain is a good gauge of health and sufficient milk intake.
Contrary to belief, breastfeeding is actually less work than bottle feeding
for babies with a heart condition. Besides offering numerous nutritional benefits,
it is easier for a baby to coordinate sucking, swallowing, and breathing. The
amount of available oxygen is greater and the baby's heart rate and breathing
are more normal during breast-feeding. Compared to bottle-fed babies, breast-fed
babies with heart disorders also grow better.
If you are trying to breastfeed but your baby's suck is weak and he/she is
not gaining weight well, you should seek the advice of a lactation nurse or
feeding specialist. The La
Leche League is a valuable resource for locating a lactation consultant
or nurse in your area. They may suggest using special feeding products such
as the Haberman feeder or supplementary nursing system to help your baby feed
more. These products can be purchased through your hospital or Medela.
Depending on your baby's situation, high calorie formula or a temporary feeding
tube may also be suggested.
These options may temporarily interfere with your nursing but you can pump
more frequently to maintain your milk supply. An electric double pump can either
be rented from a hospital supply company or through La Leche League consultants. Medela, Ameda Egnell and Avent all offer portable double pumps for purchase.
For babies that are bottle fed, they may have difficulties feeding from a regular
nipple or they may change their nipple preference after hospitalization or
surgery. You can either use a softer type of nipple or slightly enlarge the
nipple hole to allow the formula to flow more readily. If your baby continues
with poor weight gain, your doctor, nurse or nutritionist may recommend switching
to a formula that provides a higher amount of calories per ounce. Under more
serious circumstances, the doctor or nutritionist may suggest using a feeding
tube to provide formula supplements.
If your baby requires frequent feedings and medications, moving the crib next
to your bed will make it easier for you to tend to him/her during the night.
Prepared bottles and medicine can be kept near the bed in insulated bags. Convenient
bottle warmer such as the Safety 1st "Dusk to Dawn" or The First Years "Night
and Day" keeps two bottles cold and warms a bottle in 3 minutes. For medications
that need to be kept cold, you can try inserting the dosage in the syringe
and then storing it in a bag with a cold gel pack or in a cup surrounded by
ice in a bowl.
Many parents think that children with
cardiomyopathy need special low fat diets similar to what
is recommended for adults with heart disease. On the contrary,
children with heart disease have poor appetites and need
high calorie foods and snacks to increase their weight.
Only those cardiomyopathies associated with metabolic disorders
(i.e. mitochondria or fatty acid oxidation defects) require
low or no fat diets. In selected cardiomopathy patients,
a low salt diet may be recommended. The general rule is
to eat everything in moderation and maintain a body weight
that is within the normal range for height and age.
For infants and young children that are not gaining sufficient weight and cannot
tolerate increased meal portions, the nutritionist or doctor may recommend
a different approach for increasing calorie intake. Infants that are being
bottle-fed can receive increased calories per ounce by switching to a higher
calorie formula. A high calorie nutritional supplement may be recommended to
provide more calories for a breast fed baby. A nutritionist should be able
to provide guidelines for preparing more nutrient dense formulas or recommending
high calorie brands to purchase. When changing formula or milk, it is best
to gradually introduce it over a course of the month. This allows your child
time to adapt to the new taste and gives you time to observe for side effects.
Typical signs of intolerance are vomiting, diarrhea, rash or gas.
If your child is eating solid foods, you can buy or prepare foods that are
higher in calories. Some easy ways to boost calories include 1) adding margarine
or vegetable oil to baby or table food and 2) adding powdered milk or grated
cheese in certain recipes. A good book to consult is Bowes & Church's Food
Values of Portions. This handy nutritionist sourcebook lists more than 8,500
common foods and brands with data on the nutritional content (calories, fat,
sodium content) of foods organized by food categories.
If your child is taking a diuretic (i.e. lasix or aldactone), your doctor may
also recommend a potassium supplement or Pedialyte to replace the amount of
potassium and electrolytes lost with excess body fluid. Foods such as bananas,
orange juice, potatoes and dried fruits are good additional sources of potassium.
With older children, an additional area of concern is preventing dehydration
during hot weather or while engaging in sports. High calorie beverages like
Ensure, Sustacal or Nutrament (available in most drugstores and supermarkets)
are recommended over juice and water, which are not significant sources of
nutrition and calories.
Feeding Pumps And Tubes
If your child continues to have a difficult
time taking in enough food, feeding tubes and pumps on
either a temporary or permanent basis can be introduced
to make feedings easier and allow your child to gain more
weight. A nasogastric (NG) tube may be recommended for
children that require additional or frequent feedings.
Milk or nutritional supplements can be delivered through
a tube placed in the nose and passed down the throat into
the stomach. While the NG tube may look uncomfortable,
children usually adjust quickly without problems. Feeding
pumps (kangaroo pet pump is recommended) hook up to the
NG tube and allow liquid supplements or milk to be pumped
into a child continuously or at specified times. This can
be used in addition to a child taking a regular diet.
Other methods of tube feeding include gastrostomy tube (GT) or jejunostomy
tube (JT). These methods involve placing the tube surgically into the stomach
(GT) or intestine (JT). Since a surgical procedure is involved, your child
needs to be well enough to undergo this procedure. The advantages of these
tubes are that they are difficult to accidentally pull out and they do not
get clogged like the NG tube. Typically a Bard or microvasive tube may be placed
first and then a Mic-Key gastrostomy tube may be recommended once there is
a well-healed tract. Your child's healthcare team will determine the best feeding
tube and recommend a feeding schedule and plan for your child. They will also
show you how to rent any necessary home equipment, how to assemble and use
the pump/ tubes, and how to maintain and clean the tubes.
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