Children's Cardiomyopathy Foundation
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COPING & HEALING

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.

Diet

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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