Feeding Challenges in Kids with Heart Defects

Feeding disorders can be complex, and can affect multiple body systems and domains of functioning. Children with feeding disorders can benefit from a multidisciplinary feeding team. Each team member brings their own expertise, and they can collaborate to comprehensively treat the whole child. The team may include:

• a gastroenterologist

• a pulmonologist

• a cardiologist

• an otolaryngologist

• a speech/language pathologist

• an occupational therapist (OT)

• a registered dietitian (RT)

• a child psychologist

• a social worker

• a palliative care provider

• a dentist

Eating is a complex task that relies on the functioning and coordination of multiple body systems. Many medical conditions can affect feeding, and can limit a child's ability to eat safely and sufficiently. Medical causes of feeding disorders include:

• diseases, injuries, or malformations of the gastrointenstinal (GI) tract: the mouth, esophagus, stomach, intestine, and rectum

• diseases, injuries, or malformations of the airway and respiratory system: the lungs, mouth, nose, larynx (voice box), pharynx (throat), trachea (windpipe), and/or diaphragm (muscle under the lungs)

Breathing and eating use a lot of the same body parts, and they must be precisely coordinated for a child to eat safely. Aerodigestive disorders are medical problems that affect the aerodigestive tract, including structures required for breathing and/or swallowing. Aerodigestive disorders can make it hard for a child to eat and breathe sufficiently and safely.

Aerodigestive disorders that might make breathing and eating hard include:

• nerve injury leading to vocal folds that do not move, or that move weakly, so that they can block the airway (laryngeal paralysis or paresis)

• chylous pleural effusion (lymphatic fluid and fat collecting around the lungs)

• chronic rapid, shallow breathing (tachypnea)

• weak cough, or no ability to cough

• infections in the mouth, throat or lungs

• collapsing airways

• vocal folds moving the wrong way or at the wrong time, so that they block air from entering the airway when a person is trying to inhale (paradoxical vocal fold movement or PVFM)

• swallowing difficulty caused by nerve or muscle disorder (neurogenic dysphagia)

• tumors in the digestive or respiratory system

While all steps of eating and digestion are important, swallowing is unique because:

• It is a learned behavior, and is mostly under a person's control.

• It is very complicated, requiring the coordination of 26 muscles and 6 nerves

• Any swallowing problem can immediately lead to a dangerous episode of choking or aspiration.

When a person swallows, they must:

• transport food quickly from the mouth to the stomach, and

• prevent food from going into the airway

If food does not get to the stomach, and/or food goes into the airway, a child could gag, choke, or aspirate.

Swallowing has four steps:

1. Mouth preparation: chewing or sucking the food and forming it into a small soft ball (a "bolus")

2. Mouth movement: pushing the food ball backwards in the mouth and into a muscular tube in the throat (the "pharynx")

3. Pharyngeal swallow: tightening muscles in the pharynx, pushing the food down to the esophagus

4. Esophageal swallow: tightening of the muscles in the esophagus, pushing food down to the stomach

Each step must work well every time in order for a child to swallow safely and effectively.

Children can be diagnosed with a swallowing disorder (dysphagia) if they struggle with any part of the swallowing process. Among children with heart defects, common swallowing problems include:

• Poor coordination of breathing, sucking, and swallowing, which can be worse when a child must breathe more quickly than is typical

• Vocal cord dysfunction causing the airway to remain open and unprotected during eating

• Gastroesophogeal reflux (GERD) causing stomach acid to back up in the esophagus, and making swallowing uncomfortable

When a child cannot swallow effectively, they risk inhaling food into their airway (aspiration). Aspiration can cause serious breathing problems, infections, and pneumonia.

Some children with congenital heart defects also have congenital defects in their gastrointestinal (GI) tract. These could include:

• an esophagus that does not connect to the stomach

• a blockage in the intestine

• rotated and/or twisted intenstine

• missing nerves in the intestine

• no anus, or an anus that is not connected to the intestines

• intestines growing outside of the body in the fetal period

Congenital GI defects can sometimes prevent children from eating safely and effectively with their mouth. Surgeons can often repair GI defects, and as a result, many children born with GI defects are eventually able to eat by mouth in a typical way. However, some children born with GI defects continue to struggle with feeding through childhood and into adulthood.

These reflexes last for several months in most babies. Typically, they help a baby learn to eat, and then the reflexes are no longer needed. While these reflexes set the learning process in motion, babies and children must continue learning feeding skills through practice and experience.

When babies have a heart defect, they may not learn to eat well during their early life. This early gap in skills can lead to longer-term feeding challenges.

During the first years of life, children typically learn a set of feeding skills that allow them to meet their nutritional needs throughout their lives. Most children learn these skills within a similar timeline. When children do not learn these skills during the expected times, they sometimes struggle to learn them later.

Read below to understand the skills children typical learn during the first three years of their lives.

Between ages 12 and 18 months, most toddlers learn to:

• sit upright on a chair at a table, with their feet on the floor

• use their fingers to feed themself

• use a spoon

• drink from a sippy cup independently

• drink from an open cup with help

• use their tongue to move food back and forth within their mouth

• drink from a straw

• eat food with mixed textures

• ask for food and drink when they are hungry or thirsty

Between ages 2 and 3 years, most children learn to:

• eat on their own with a fork and spoon

• drink from an open cup without spilling

• bite, chew, and swallow any texture of food

Children with heart defects sometimes miss the opportunity to learn feeding skills at the usual times. When eating by mouth is delayed or disrupted, children may struggle to catch up.

Sometimes, children with heart defects can have developmental delays or disabilities that make learning any new skill harder or slower than is typical. Feeding is a complex skill, and children with developmental challenges sometimes learn feeding skills later than other children, or differently from other children.

Children with heart defects often have trouble learning feeding skills when they:

• do not eat by mouth until after their first surgery

• are intubated early, often, and/or for a long time

• do not eat by mouth for a long period of time

• are born pre-term

• have delays or disabilities that affect their motor skills and/or cognitive skills

• are often sedated

• have frequent surgeries and/or other invasive medical procedures

• are only permitted to eat foods of certain textures or consistencies

• do not feel hungry, and do not want to eat

Feeding development can be delayed or impaired in many possible ways. Sometimes, children simply do not know how to use a spoon or a cup, or they have not yet tried solid foods.

Other types of feeding delays can be more complicated, and stem from how children recognize, interpret, and control the signals within their mouth and throat. Keep reading to learn about these types of feeding delays.

Sometimes, children do not learn to perceive food in the mouth in a typical way. They can develop:

• under-responsive (hypoactive) in oral sensory functioning: they have trouble noticing, recognizing, and interpreting what is in their mouth, which results in:

  • not always knowing if food is in their mouth

  • difficulty forming food into a ball (bolus)

  • forming food into a ball (bolus) that is too big

  • spilling food out of the mouth while eating

  • gagging or refusing when offered food that is smooth, room temperature, and/or mild in flavor

  • preferring food that has a strong taste, that is either hot or cold, and that is chunky or crunchy

• over-responsive (hyperactive) oral sensory functioning: they react strongly to sensations in their mouth, and perceive many mouth sensations as very strong, which results in:

  • frequent gagging

  • forming food into a very small ball (bolus)

  • gagging or refusing when offered food with a strong taste, pronounced texture, and either hot or cold temperature

  • excess chewing

  • preferring food that is smooth, mild in flavor, and room temperature

During infancy, most children learn that eating is pleasurable and safe. Their early experiences set them up for a lifetime of exploring and enjoying food.

When a child has a heart defect, however, they can miss out on early positive experiences with eating. Instead, they sometimes learn that eating can be scary, sickening, or painful.

Older babies and toddlers usually try a wider range of food. Following the lead of their family, young children generally build a repertoire of foods that are common in their culture, and that they consider tasty and safe.

When early feeding experiences are disrupted, however, children may instead learn to be very cautious around food. They may eat only certain foods in a certain way, and be unable or unwilling to expand their palate.

Emotionally- and behaviorally-based feeding disorders are fairly common among children with heart defects. They range from mild to severe, and vary in the degree to which they affect a child's life and health.

Any child can develop an emotionally-based feeding disorder, but some children are at especially high risk of developing one. Emotionally-based feeding disorders are more common when a child has experienced:

• aspiration (swallowing food into their airway)

• choking

• gagging or retching with eating

• acid reflux

• pain or nausea with eating

• injury to the throat

• intubation

• often eating to a point of uncomfortable fullness

• family stress around eating and weight gain

• a serious allergic reaction to a food

• adults trying to get a child to eat in a way they are not yet able to do

• adults trying to get a child to eat more than they want to eat

• general anxiety, or fear of contamination

• medicines or tubes forced down their throat

• frequent bad-tasting medicines

• feeling out of control and unsafe in general

• fear of new things, and a desire for sameness and routine

• a diagnosis of autism spectrum disorder (ASD)

Children with oral sensory aversions are unable to tolerate certain food tastes, textures, and/or temperatures. Children may also have aversions to how certain foods look, sound, and/or smell. When children have food-related sensory aversions, they avoid foods they perceive as unpleasant.

For some kids, sensory aversions are not a problem. They may avoid a few foods or food types, but still remain well-nourished and able to participate in all parts of their daily life. For other kids, sensory aversions can severely restrict their diets. They may face malnutrition, and may be unable to participate in typical activities such as eating in a cafeteria, going to a birthday party, or eating at a restaurant.

When sensory aversions impair a child's health or daily life, families can find support to help their children tolerate a wider range of foods.

Mealtimes can be stressful for many families with heart defects, especially if a child has a history of poor weight gain or unsafe eating. Sometimes, children communicate their stress about eating through challenging behaviors. Children may also use eating behaviors to assert control over their lives and their bodies, especially if they feel a lack of control in general.

For example, children may:

• decline to sit at the table, or get up from the table frequently

• have behavioral meltdowns during meals, including crying and yelling

• hit, kick, or throw

• argue about the choice of food

• argue about whether they will eat, or how much they will eat

• refuse to eat foods that the child is usually able and willing to eat

• throw food or plates

• ruin food on purpose

• insist that parents make something different

• require rituals or routines around food that interfere with other people's enjoyment

• not eat in front of other people

  Disruptive mealtime behaviors can sometimes cause health problems if a child does not eat enough food, or enough variety of food. These behaviors nearly always cause significant anxiety within the family. Therapists can work with children and families to understand the root of these behaviors, and to find solutions that work for everyone.

Children with emotionally-based feeding disorders can learn to eat more widely and comfortably with appropriate treatment. Depending on a child's needs, treatment can include:

• psychotherapy with a psychologist or social worker to face underlying fears and stressors

• family therapy to work on mealtime dynamics and family-level stress

• parent guidance to establish more adaptive eating routines and programs

• feeding therapy with a speech and language pathologist to increase food acceptance, and to face fears around swallowing

• occupational therapy to reduce sensory aversions, and to find tools, routines, and strategies that make eating more pleasant

• applied behavior analysis (ABA) with a board-certified behavior analyst (BCBA)

Eating and food are central to human culture, and feeding is central to nurturing. When a child struggles to eat, parents often feel intense emotions including grief and frustration. Many parents blame themselves, and may even feel that they have failed at a big part of parenting. If you are facing such feelings, please know that you are not alone, and that your child's feeding problems are not your fault.

Experts are available to diagnose and treat children's feeding problems. Appropriate treatment can help ensure that children's bodies remain nourished, and that children and their families feel supported. No matter how a child eats, families can come together around meals, find joy in nourishment, and feel the satisfaction that comes from meeting each other's needs.

This content was reviewed by staff at the Cardiac Neurodevelopmental Program 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) and the Boston Adult Congenital Heart (BACH) program. Families from other regions can use the link below to find their local care team.