Feeding Babies with Congenital Heart Defects (CHD)

Babies with complex heart defects often face multiple stressors that can affect their feeding and growth. For example:

• Surgeries and other medical procedures can set them back in their development

• Breathing tubes can make it hard to suck

• Sedation medicine can make it hard to stay awake to eat

• Developmental delays can make it hard for them to coordinate sucking, breathing, and swallowing

• When their hearts are working hard, they may be too tired to eat enough

• When feeding is difficult or delayed, they may learn to dislike having objects or fluid in their mouths

• Medical conditions can make feeding scary or painful

As a result of these and similar challenges, babies with heart defects are often slower than others babies to learn how to eat safely and efficiently.

As an adult, it can be hard to appreciate the difficulty and complexity of eating. Feeding is a complicated skill, involving the well-timed coordination of multiple muscles and systems. Babies need to gain certain skills before they are ready to feed by mouth.

Parents can speak with their medical team about strategies that can help prepare their baby to eat. For example, parents can often:

• give the baby a clean finger or pacifier to suck on

• cuddle the baby skin-to-skin in a position that they would use for feeding

• hold the baby during tube feedings in a position they would use for oral feeding

• dip a pacifier or clean finger in breastmilk, formula, colostrum, or sugar water, and put it on the baby's lips or in their mouth

• encourage the baby to explore the mother's breast or bottle, without actually eating

• help the baby to get their hands to their mouth

• put something that smells like the breastfeeding mother in the baby's sleeping space

As soon as a baby is ready, the family and care team can try the baby's first oral feed. Many experts suggest doing this first feed as early as possible, often before a baby's first surgery.

For the first oral feed, the family and medical team decide whether the baby will eat from a breast or a bottle. During the feed, the baby is closely monitored. As the baby eats, medical staff make sure the baby remains stable, and can both breathe and swallow safely.

If the mother is breastfeeding, the care team may give her a nipple shield to make sure the milk does not come out faster than the baby can handle. If the baby is bottle feeding, the care team will carefully select a nipple to control the flow.

These strategies can help to make the first oral feeding successful and rewarding for the baby and their parents:

• Wait until the baby is giving cues that they are ready:

  • awake and alert

  • calm and well-regulated

  • hungry and interested in food

• Swaddle the baby

• Dim the lights, and keep the space quiet

• Cradle the baby against a parent's body, on their side, with their head and chest higher than the rest of their body

• Put a little milk or formula on the baby's lips to give them a taste of what to expect

• Encourage the baby's rooting reflex by gently brushing their cheek, and waiting for them to turn their head and open their mouth

• Gently move the nipple across across the baby's lips to encourage them to latch

The care team will watch closely, and help the parents adjust the feeding to match the baby's needs. At first, babies eat very small meals. But if all goes well, they soon will be able to eat more.

The first oral feed is an exciting milestone, but is just the beginning. Most young babies need to eat every few hours. Babies with heart defects may need to eat even more frequently. A baby's family and medical team can work together to determine when and how to feed the baby.

For most babies, these tips can help to make feeding successful and enjoyable for both parent and child:

• Whenever possible, wait until the baby is showing interest in feeding before offering food. (This may not be possible for babies with little appetite and high calorie needs).

• Make sure the baby is fully awake and alert before feeding.

• Hold the baby while they are eating, skin-to-skin holding whenever possible.

• Feed the baby in a space that is quiet, dim, and calm.

• Swaddle young babies securely, and make sure that their arms and hands do not get in the way of the nipple.

• Give the baby quiet, calm, loving attention while they eat.

• Pace the food, not giving too much at once, and giving breaks if needed.

• Closely watch the baby and read their cues. Keep feeding as long as they are showing you they are ready. Stop feeding if they are showing you they need to stop.

Despite the best efforts of their parents and care team, some babies with heart defects are slow to grow and gain weight. Parents often feel complex emotions when a baby does not grow well, such as sadness, guilt, and fear. However, parents are almost never to blame when a baby with a heart defect grows slowly.

Many babies with heart defects grow slowly for one or more of these reasons:

• They need extra calories since their heart is working so hard

• They are tired, and have trouble with the physical effort required to eat enough

• Their body is not effective at digesting their food and using it for growth and energy

• Eating is painful or scary because of their medical conditions or medical history

• They are not very skilled at coordinating their feeding muscles, and so cannot eat efficiently

• They are overwhelmed a lot of the time, and have trouble regulating themselves well enough to eat

If a baby with a heart defect is not growing well, the care team has multiple options to boost their growth.

Some babies with heart defects require changes to what they are eating in order to make sure they can eat safely, and grow well. Families can work with members of their care team to determine if and how they need to modify a baby's food. The care team may include:

• a gastroenterologist

• a pulmonologist

• a cardiologist

• a neurologist

• a dietician

• a speech and language pathologist

• a lactation specialist

• a developmental-behavioral pediatrician or psychologist

• an occupational therapist

• a physical therapist

Sometimes babies need changes to their food such as:

• formula containing a special combination of nutrients to meet their individual needs

• formula that does not contain certain allergens or hard-to-digest ingredients

• milk or formula with added nutrition and calories

• thickened milk or formula

Families should always consult with their doctors before making any changes to a baby's diet.

Some babies with congenital heart defects (CHDs) are able to eat safely by mouth, but are not able to eat enough for optimal growth and development. In these cases, babies may require tube feeding to supplement their oral feeding. Some babies use tube feeding only briefly, and other babies use tube feeding for months or years.

Options for tube feeding include:

• Nasogastric (NG) tube: A tube goes in a baby's nose, down their throat, and into their stomach.

• Nasoduodenal (ND) tube: A tube goes in a baby's nose, down their throat, past their stomach, and into the top part of their small intestine.

• Nasojejeunal (NJ) tube: A tube goes in a baby's nose, down their throat, past their stomach, and into the the middle part of their small intestine.

• Gastrostomy (G) tube: A doctor makes a small hole in the abdomen and stomach. Then, they place a small tube through the abdominal wall, directly into the stomach.

• Gastrojejunostomy (GJ) tube: A doctor makes a small hole in the abdomen and stomach, and then places a tube that goes past the stomach and into the middle part of the small intestine.

• Jejenostomy (J) tube; A doctor makes a small hole in the abdomen and small intestine, and places a small tube that goes directly into the small intestine.

Tubes in the nose are relatively easy to take in or out, and can be used for a short time. However, they can be awkward to manage, sometimes fall out, and some people find them uncomfortable.

Tubes in the abdomen are placed through surgery, which carries some risk. They are used for longer-term therapies. Once they recover from the placement surgery, children and parents often find G-tubes or J-tubes more comfortable and convenient than nasal tubes.

The care team and family should work together to decide the best option for tube feeding a baby.

Some babies with heart defects are not able to eat by mouth at all. Sometimes they cannot eat by mouth only temporarily, and other times they cannot eat by mouth for a long time.

When a baby cannot eat by mouth, doctors help families to give them the nutrition they need. Usually, babies can be fed with tubes into their stomach or intestine. Caregivers can connect liquid food to a pump that delivers the food into a baby's body.

Occasionally, babies cannot eat through their digestive system at all, or they cannot eat enough through their digestive system to meet their needs. In these cases, doctors give babies " parenteral nutrition," which is nutrition delivered directly into the bloodstream. Babies receive parenteral nutrition as a liquid. A tube is placed in a baby's vein, and the liquid nutrition goes into their body through this tube.

Feeding a baby with a heart defect can be uniquely stressful for families. Parents often feel intense pressure to help their babies gain weight quickly, and then fear, sadness, or shame if babies do not grow as fast as doctors advise. However, parents should not need to feel such distress around feeding.

When families and feeding teams work together collaboratively, they can find effective ways to nourish babies. They can work to ensure that a feeding plan meets the baby's needs physically, emotionally, and socially. At the same time, the team can nourish the family system, by encouraging practices that support parents and siblings, and that promote bonding between parent and child.

If you are a parent struggling to feed your baby with a heart defect, know that you are not alone, and it is not your fault. You can talk to your medical team to find the help you need to care for your baby.

This content was reviewed by staff at Boston Children's Hospital.

Developmental care is best when it is local. Families local to Boston seek developmental support from the Cardiac Neurodevelopmental Program (CNP). Other feeding care is available through the programs listed below. Families from other regions can use the link below to find their care team.