SPOON Foundation

Congenital Heart Disease

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Congenital heart disease (CHD) is the name for conditions present at birth where a child’s heart has a defect in the way it, or the vessels that go in and out of it, are formed. There are two types of defects.

1) Blood is prevented from flowing through the heart or the vessels near it, or

2) Blood flows through the heart, but in an abnormal way.

Recent research estimates 1.35 million children worldwide are born with CHD each year. Since access to health care and diagnostic services is limited in many parts of the world, particularly low-income countries, there are likely many cases of CHD which go undiagnosed.

Many children with minor forms of CHD may not require treatment in early childhood. Either the defect resolves itself early on or the condition does not present until adolescence or adulthood. However, children with more severe forms of CHD may have symptoms which require medical or surgical treatment early in life. Symptoms requiring medical attention include:

Nearly all infants and children with CHD are at nutritional risk. The type and severity of the cardiac malformation will determine the extent of nutritional compromise, but most will experience some degree of nutritional deficit. Many infants with CHD receive corrective surgery in the first days to months of life. Infants who have a good nutritional status improve their chances of a favorable surgical outcome. Some infants will not be able to receive their surgery until they are at an appropriate weight. Additionally, some infants or children who are adopted never received the surgery that should have occurred early on. For these reasons, as well as for meeting long term growth and developmental goals, optimal nutrition for infants and children with CHD is of utmost importance.

Infants and children with CHD have energy needs up to 20-50% more than healthy infants and children of the same age. Often, 140-150 calories/kg of body weight (64-68 calories/pound) are required for desirable growth, muscle and fat accumulation to occur. However, some research indicates that a diet based on a child’s actual weight may underestimate their calorie needs. And so, some doctors may recommend a child with CHD consume a diet based on normal intake for children the same age. Click here for recommended daily calories for “typical” children.

The following factors contribute to increased calorie needs.

Infants with CHD have to work harder than healthy infants to breathe and to pump blood throughout their bodies. Therefore they burn more calories simply by breathing and pumping their blood.

Increased metabolism is often a result of a child’s body composition. In infants and children with CHD, decreased caloric intake and greater energy expenditure often leads to having less available energy for fat deposition. This can result in a child having a higher percentage of lean body mass, which tends to increase the metabolic rate.

Because they have to work so hard to supply their bodies with oxygen, infants with CHD tire easily and have less strength for eating. A baby may stop eating after only a short time and this may be due simply to the baby using up all of its available energy, not because she is full.

Some infants have difficulty absorbing nutrients from food they eat. This is because the blood vessels in their intestinal tract do not receive enough oxygen, or because they are taking medications that decrease the gut’s ability to absorb food. For the same reason, infants with CHD can have slow movement of food through their stomach and intestines. This can lead to reflux, which can lead to poor intake or resistance to feeding. For infants with an enlarged heart, their stomach size may be decreased, which can lead to an early sense of fullness.

Meeting Nutritional Needs

Special measures will most likely be taken to meet an infant or toddler’s caloric needs. These can include one or all of the following:

For infants, the increased caloric need often comes in the form of providing high calorie infant formula. Standard preparations of infant formulas provide 20 calories/ounce. Infants with CHD often require 24-30 calories/ounce infant formula to accomplish desired growth. If your infant is not gaining weight properly, or is struggling to meet his or her volume goals, a pediatrician or a pediatric dietitian can provide an appropriate recipe for concentrated infant formula. Do not attempt to concentrate the formula without a recipe provided by a professional.

For toddlers with CHD, energy needs continue to be high, sometimes even after they receive all of their corrective surgeries. The first step of successfully feeding any toddler is to provide structured meals and snacks and to minimize grazing, or frequent snacking, between scheduled meals and snacks. Calorie-containing beverages (juices, milk) should be limited to scheduled meal and snack times. If a child is allowed to graze, their total daily caloric intake and quality of diet will both decrease.

In addition to providing a balanced diet, the use of high calorie and high protein foods can help to increase a toddler’s calorie and protein intake. Here is a list of high calorie and protein foods that can be added to your child’s diet. High calorie drinks, such as PediaSure®, or high calorie milk recipes may be recommended to provide additional calories. These should be offered in place of milk at a scheduled meal or snack.

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Sometimes, it is not possible for an infant or toddler to meet all of her nutritional needs by mouth and her medical team may recommend the placement of a feeding tube. Feeding tubes can be temporary (through the nasal passage) or more permanent (directly into the stomach through the abdominal wall). Feeding tubes can be a wonderful way for children with CHD to meet their nutritional needs. They can be allowed to eat orally what they are able to, and then receive supplemental feedings through their feeding tubes. When they are ill or recovering from surgery, they are able to receive adequate nutrition, which will improve recovery time. Feeding tubes can also relieve the stress many families feel to feed their child adequately, freeing up time for rest, developmental progress, and family bonding time.

Infants and toddlers with CHD may require frequent feedings to meet their energy needs. If your infant usually eats every 3-4 hours but is not able to meet her volume goal, or is not gaining appropriate weight, it may help to decrease the amount given at each feeding, but to increase feedings to every 2 hours. For example, if an infant is supposed to eat 4 ounces every 3 hours (8 times a day for a total of 32 ounces/day), it may help to change to 3 ounces every 2 hours (11-12 times a day for a total of 33-36 ounces). Sometimes it is necessary to provide a feeding in the middle of the night, even if the infant is sleeping through the night. A dietitian should be consulted to customize a feeding schedule for your child.

Toddlers will also benefit from frequent meals and snacks. A recommended schedule would be 3 meals and 3 snacks. This is different than letting your child graze throughout the day. Feeding times should occur at scheduled times and should be spaced out by at least 2-3 hours. If your child eats or drinks foods and beverages (other than water) more frequently than this, it can actually curb appetite and result in decreased caloric intake overall.

An example feeding schedule for an older infant or toddler could be as follows:

8am – breakfast

10am – mid-morning snack

12pm – lunch

3pm – afternoon snack

6pm – dinner

8pm – bedtime snack

SPOON Foundation

135 SE Main St, Suite 201, Portland, OR 97214
info@spoonfoundation.org
http://www.spoonfoundation.org

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