Congenital Heart Disease

Congenital heart disease is the name for any condition 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 normally through the heart or the vessels near it, or
  2. Blood flows through the heart, but in an abnormal way.

Nearly all infants and children with congenital heart disease (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. Many infants with CHD will have long term or transient feeding issues after surgery. These infants tend to get tired easily, so they should be on a tight feeding schedule. Often, they will not cry when they are hungry because they are just too weak or tired to cry.

Additionally, some infants or children living in institutions never receive 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 increased energy needs compared to healthy infants and children of the same age. Often, more calories are required for desirable growth, muscle and fat accumulation to occur.

The following factors contribute to these increased needs:

  • Increased Metabolism: 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.
  • Decreased Energy: 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 he/she is full.
  • Gastrointestinal Compromise: 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:

Food

For infants, the increased caloric need often comes in the form of providing high calorie infant formula. Standard preparations of routine infant formulas provide 20 calories/ounce. Infants with CHD often require 24-30 calories/ounce infant formula to accomplish desired growth. If an infant in your care 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. Calorie-containing beverages (juices, milk) should be limited to scheduled meal and snack times.

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 or high calorie milks may be recommended to provide additional calories. These should be offered in place of milk at a scheduled meal or snack.

Feeding Route

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.

Schedule

Infants and toddlers with CHD may require frequent feedings to meet their energy needs. If an infant in your care 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 and 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. However, it is important to limit the length of each feeding to no more than 30 minutes because infants with CHD are at risk of expending more than calories than they are taking in if a feeding is prolonged. A dietitian should be consulted to customize a feeding schedule for a child with CHD.

Toddlers will also benefit from frequent meals and snacks. A recommended schedule would be 3 meals and 3 snacks. Feeding times should occur at scheduled times and should be spaced out by at least 2-3 hours. If a 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.

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