The goal of feeding any infant or baby is to have steady and continued weight gain. This holds true for infants and babies with congenital heart disease (CHD), although appropriate weight gain may be more difficult. Babies with CHD often need more calories per day than babies with normal hearts, particularly if they are struggling with symptoms of congestive heart failure. This is because their bodies and hearts have to work harder to get blood and oxygen to all parts of their bodies. This causes them to burn more calories. Also, the act of eating can be difficult for babies with CHD. The coordinated suck, swallow, and breathing process can be very tiring, causing them to burn more calories.
In order to gain weight, babies with CHD need to take in more calories than their bodies are burning, but it is not always as easy as just having them eat more. Often, their stomachs cannot hold larger amounts of formula or breast milk, or they just tire out before they can drink it all. Your doctor or cardiologist may recommend increasing the calories of your baby’s formula or breast milk. Basic formula and human breast milk both have 20 calories per ounce. There are some increased calorie formulas available, or your doctor may give you instructions on how to mix your baby’s formula at home to have more calories per ounce. A baby with CHD may require milk that is 24 to 30 calories per ounce. Breast milk can be fortified to increase the calories. To increase the calories of the breast milk, you would need to pump and then mix in the fortifier (your doctor will provide instructions).
Sometimes, even with increased calories, babies with CHD are not able to take in enough by mouth to gain weight. In this case, your baby may need to have a nasogastric (NG) tube placed. This is a small flexible tube that is placed in your baby’s nose and passes down into the stomach. This allows for formula or breast milk to be given without your baby having to burn so many calories to take it by mouth.
Gastroesophageal reflux (GERD) is often another problem for babies with CHD. Reflux happens when stomach contents move backward into the esophagus and sometimes upward into the mouth. Infants with reflux can spit up or even vomit after feedings. This can cause two problems for infants with CHD:
- First, the spitting up or vomiting is a loss of calories, thus reducing their overall intake. This can lead to your child not taking in enough calories to gain weight.
- Seconds, when stomach contents move backward up into the esophagus, there is a chance they could go back down the wrong way (in the trachea) into the lungs. This is called aspiration. Aspiration can cause damage to the lung tissue and/or lung infections like pneumonia. This is a serious complication for infants with normal hearts, but it is even more serious for infants with CHD. Their lungs and heart have to work so hard to get oxygen into the blood and out to the body that the smallest amount of damage can cause significant problems with your infant’s ability to get oxygen into the blood. This often can be managed by surgery.
One procedure is a Nissen fundoplication. In this procedure, a surgeon wraps part of the stomach around the lower part of the esophagus to tighten up the area, making it harder for stomach contents to move backward. It is not uncommon that during this same procedure a gastrostomy or feeding tube (also called a G-tube) would be placed into the stomach directly, especially for patients who are at high risk for aspirating when feeding by mouth. A G-tube allows for formula and or breast milk to go directly into the stomach, thus reducing the risk of aspiration and decreasing the amount of energy needed to feed.
The need for nasogastric or G-tube feedings early in life does not mean that a baby will always have to be fed in this way. If successful heart surgery is performed or if the symptoms of heart failure are more successfully managed, a baby may then be able to resume taking food by mouth again. It is not uncommon for babies who have to be fed with tubes in the hospital to quickly begin feeding by mouth once they are at home. Some babies will have to relearn the coordination necessary to suck and swallow. An intensive oral training program can be tailored for these children.