Feeding Problems in Babies with Heart Defects

Early feeding problems affect more than a third of babies with complex heart defects. They can be very troubling for parents, and can also cause other problems for babies.

Feeding problems can lead to:

• delayed discharge from the hospital

• delayed surgeries

• malnutrition

• poor growth

• developmental delays

• medical complications such as aspiration pneumonia or necrotizing enterocolitis (NEC)

• parent stress

• a need for further medical interventions

• oral aversions

• dependence on tube feeding

• ongoing feeding challenges through childhood

Many interrelated factors can contribute to babies' feeding problems. By understanding the complex nature of the problems, parents and their medical teams can develop comprehensive treatment plans to help.

All newborns need to learn how to breathe, suck, and swallow at the same time. They must be able to swallow milk and not inhale it, to avoid choking.

The sucking reflex is instinctive, and most healthy, full-term babies are able to coordinate the actions required to eat very quickly. This learning process is often disrupted in babies with heart defects.

Many babies with heart defects have to work harder to breathe than healthy babies, and they often breathe more quickly. Babies who are working very hard to breathe often are not able to safely suck and swallow at the same time.

Babies with heart defects are often working hard just to stay alive. They can become tired easily, and may not have the energy or strength to put forth the effort needed to eat. Since their bodies may need even more calories than a healthy baby, they may not be able to eat enough to support their growth and development.

Some babies take medicines that make them even more tired, which can add to the problem of staying alert when eating.

When babies rely on tube feeding for their first weeks or months of life, they may be slow to develop typical oral feeding skills. They often have trouble with:

• coordinating breathing and swallowing

• sucking effectively

• latching onto a breast or bottle

• tolerating objects in their mouth

• enjoying and tolerating the taste and texture of milk or food

Babies may need more time and specialized help from to learn these skills.

Gastro-esophageal reflux disease (GERD) is common in all babies, and is especially common in babies with heart defects. It is also called "acid reflux" or "acid indigestion." When a baby has GERD, some of acid and food from their stomach comes up into their throat.

Babies with GERD may:

• cough or choke while eating

• gag or vomit while eating

• arch their back and cry while eating or after eating

• be irritable

• lose weight or have trouble gaining weight

• have breathing problems

When a baby has GERD, parents and the feeding team can usually help by adjusting how and when the baby eats, changing the baby's food, and using medicines.

Some babies with heart defects are at increased risk of aspiration. When a baby aspirates, they inhale milk or formula into their breathing tract, instead of swallowing it into their stomach. Aspiration can lead to pneumonia and other serious breathing problems.

Babies are more likely to aspirate if they have:

• vocal cord injury or paralysis

• single ventricle disease, especially in the interstage time between their Norwood and Glenn surgeries

• genetic syndromes

• poor or slow movement of food through the throat

• physical differences in the upper sphincter of the throat

• a history of having a transesophageal echocardiogram, in which the transducer is put into the mouth and down the throat

The feeding team can evaluate each baby's risk of aspiration, and develop a feeding plan to avoid it.

Sometimes, the medical treatments that are necessary to repair heart defects can also damage one or more of the nerves around a baby's throat (the vagus, recurrent laryngeal, and phrenic nerves). When these nerves are injured, the top of the baby's airway does not fully open or close. Then, when the baby eats, some of their food may go into their airway, which is called "aspiration."

Nerve injury and vocal cord dysfunction are especially common after surgical repair of the aortic arch, and after the Norwood Procedure.

In most cases, nerve injuries and vocal cord dysfunction get better on their own in the months following surgery. While babies with vocal cord dysfunction often need tube feeding for awhile, they generally are able to learn to feed by mouth eventually.

Some kinds of heart defects cause blood heading to the heart and the body to combine, which is called "intracardiac mixing." For example, single ventricle diseases cause this kind of mixing.

When babies have intracardiac mixing, doctors must be very careful to make sure their body is getting enough oxygen at all times. Sometimes, feeding can mean that these babies do not get enough oxygen-rich blood to their intestine, which can cause damage to the gut.

The medical team can work with families to develop a feeding plan for babies with intracardiac mixing. Sometimes babies can be safely fed orally or through a tube, and other times feeding is delayed until after the first surgery. When feeding is delayed, babies often have trouble learning oral feeding skills.

Babies with complex heart defects are at a higher than usual risk of necrotizing enterocolitis. When a baby has necrotizing enterocolitis, the tissue in their intestine becomes injured or inflamed. As a result of this injury, parts of the intestine can die or break.

When a baby has necrotizing enterocolitis, they generally are not fed until they recover. Once they recover, they often have a hard time learning to eat again.

For many babies with heart defects, the timing of their life-saving surgeries interferes with the typical development of feeding skills.

In typical development, the first week of life is dedicated to bonding with primary caregiver(s), and learning to eat. Babies with heart defects often undergo their first surgery during their first week of life. In some cases, they do not receive any oral feedings before the surgery. After surgery, feeding may be disrupted by their medical treatment and recovery. As a result, babies often miss the typical opportunity to establish basic reflex-based feeding skills during their first week of life.

Babies with single ventricles often undergo their second surgery midway through their first year of life. This timing coincides with the stage of development when babies learn to eat voluntarily. As a result, babies may not learn how to eat with intention and control since they may spend that time preparing for and recovering from a major surgery.

When babies miss the typical developmental windows to learn feeding skills, they may need extra help and extra time to catch up with their peers.

Sometimes babies with heart defects must take medicines that make it harder for them to eat.

Some medicines cause symptoms such as nausea or constipation, which can reduce a baby's appetite, and make feeding uncomfortable. Other medicines make babies very sleepy, so that they do not have the energy to eat. Medicines can also affect a baby's breathing, which can make oral feeding difficult or impossible. When babies are weaning off certain medicines, they can also experience side-effects that make eating hard.

When medicines disrupt early feeding, babies may learn to eat by mouth later than their peers.

Lymph ducts carry the body's lymph fluid, which is a watery liquid that helps to remove dangerous substances from the body. During surgery, sometimes a baby's lymph ducts are damaged. When this damage happens, a fluid called "chyle," which is a mix of lymphatic fluid and fat, can leak into the area around a baby's lungs. This is called "chylous pleural effusion."

Chylous pleural effusion can make it hard for babies to breathe. When a baby has chylous pleural effusion, they often need to eat a low-fat diet, and may require other treatments and interventions. These medical complications and treatments can make it harder for a baby to learn to eat.

Some babies with heart defects have trouble breathing, and need help in order to get the oxygen their bodies need. Depending on a baby's needs, options for breathing support can include:

• nasal cannula (a tube that goes around the face and into each nostril)

• non-invasive positive pressure ventilation (a mask or high-pressure cannula)

• mechanical ventilation (a ventilator pushing air in and out through a tube down the throat)

• extra-corporeal membrane oxygenation (ECMO) (a machine doing the work of the heart and lungs)

When a baby has breathing support, the hospital medical team will work with the family to figure out the best way for the baby to eat. Sometimes babies can eat from a bottle or breast while getting breathing support, and other times babies can more safely eat through a tube.

Babies with complex heart defects sometimes develop more slowly than other babies. Developmental delays can make it harder for them to learn the skills they need in order to learn to eat well.

For example, babies with heart defects sometimes have low muscle tone, and unusual trouble focusing their eyes to look at something on purpose. These sorts of developmental delays can mean that babies have trouble learning to eat.

When babies with heart defects also have genetic conditions, they are particularly likely to face difficulties with feeding. Genetic conditions often influence feeding if they cause:

• physical differences such as a cleft lip or palate or unusual tongue placement

• medical treatments that prevent a baby from having the opportunity to eat by mouth

• brain differences

• delays in controlling mouth muscles

An early and accurate genetic diagnosis can help families and providers to develop a feeding plan for babies with genetic syndromes.

When babies spend early weeks or months in the hospital, they live within an environment that is stressful, and not adapted to the needs of early development. Hospital rooms are often louder and brighter than babies like, and hospitalized babies face stressors such as painful procedures and multiple caregivers.

When babies and their parents are very stressed, they have a harder time learning how to eat. Developmental care practices that promote healthy development in the hospital can help babies and families to do better in a hospital environment.

Feeding a baby is a basic parental task. When a parent cannot feed their baby, or when feeding becomes stressful or scary, parents often feel sad and disappointed.

It can be helpful to think of feeding a baby as just one part of the big, important task of nurturing. Babies need their parents' love and care, even when the babies struggle to eat by mouth. Whether a baby eats by breast, bottle, or tube, or a combination of all three, parents can bond with their babies and provide for their babies.

Parents can nurture their babies by:

• holding them as much as possible, especially skin-to-skin

• putting hands on them when they are not able to be held

• putting a shirt or other object that smells like you in their space

• learning to read and respond to their cues

• talking and singing to them

• cuddling them while they are feeding, even if they are tube-fed

• cradling them while giving them a pacifier

• containing them in blankets or other supports so that they feel safe

• being consistent and present

Parents can work with their medical team and developmental team to meet their baby's physical needs and developmental needs. As babies grow and develop their needs will evolve, but their need for a consistent and responsive parent never changes.

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

Developmental care is best when it is local. Families local to Boston can receive care from the Cardiac Neurodevelopmental Program (CNP). Families from other regions can use the link below to find their local care team.