Nutrition needs for your child

Nutritional issues affect growth and development in children with congenital heart disease:

• The heart must pump faster to meet the body's needs. The body's metabolism is also faster under these conditions. Your child needs extra calories to maintain weight and grow.

• Your child may become tired quickly since the body is working harder under the stress of the heart defect. Your child may not have enough energy to eat correctly. Infants may tire quickly during a feeding or even sleep through it. Older children may pick at their food, complain of being full after a few bites, or ask for rest breaks. Your child may be too tired to eat enough even though they need more calories just to maintain weight.

• Your child may not be able to absorb nutrients correctly (malabsorption). This is because the intestines aren't getting enough oxygen. 

Your child's primary healthcare provider, nurse, or nutritionist can help create a plan to make sure that your child gets enough nutrition to meet their body's needs. Suggestions may include:

• High-calorie milk, formula, or breastmilk. You may be able to add special nutritional supplements to formula or pumped breastmilk to increase the number of calories in each ounce. These let your baby drink less but still get enough calories to grow. High-calorie drinks are also available to boost older children's nutrition.

• Supplemental tube feedings. Tube feedings can either supplement or take the place of regular feedings in a child who needs to take in more calories and nutrients to grow. Your child's healthcare provider may give tube feedings through a small, flexible tube. This tube will pass through the nose, down the esophagus, and into the stomach. In some cases, where tube feedings may be a more long-term (chronic) issue, the healthcare provider may put a tube directly into the stomach. This is done through the belly (abdominal) wall. Infants may be able to drink what they can from a bottle. They are then fed the remainder through the feeding tube. Infants who are too tired to bottle-feed may get their formula or breastmilk through the feeding tube alone. Older children may need tube feedings at night. They then eat what they want during the daytime.

• High-calorie foods and snacks. Try to offer your child nutritious foods and snacks that are high in calories and nutrients when possible. Read labels and become aware of the calorie content of foods. For instance, some baby foods have very few calories. Others have many. Healthy foods, such as vegetables, may not have very many calories, but adding some melted cheese or dip can boost the calories. Don't give your child foods that have empty calories. These include foods with a lot of sugar and few nutrients, such as sugary soft drinks, junk foods, and fast foods. Try to give your child a balanced diet, as well as one higher in calories. Ask your child's healthcare provider, nurse, or nutritionist for more ideas.

Developmental thoughts

Children with congenital heart disease may fall behind in their development for several reasons. These include:

• Genetic problems linked to heart defects also affect cognitive and motor development.

• Inadequate nutrition doesn't meet the body's energy requirements. This can affect growth and development of muscles, bones, and brain and nerve cells.

• Inadequate nutrition causes children to tire quickly or not be able to keep up physically with others their same age.

• Illness and frequent, or prolonged, hospital stays may prevent the child from getting enough stimuli that are important to correct development. This includes being played with, talked to, held, or touched.

Parents of children with congenital heart disease can help promote their child's development. Healthcare team members will give guidelines that are special for each child. Here are some ways you can encourage your child's development:

• Touching and talking to your child. This can soothe them and give reassurance. This is especially so in the intensive care unit or right after surgery, even if they have been sedated.

• Encourage light physical activity after surgery, as directed by your child's healthcare provider.

• Provide your child with a variety of toys and other objects that stimulate the senses of hearing, vision, touch, and smell, even while in the hospital. Bring items from home, or ask the hospital staff if they can provide stimulating objects for your child. Many hospitals have special departments designed to help nurture your child's emotional and physical well-being while they are a patient.

• A physical therapist can help provide exercises that are safe for children of all ages to encourage their development. Ask your child's healthcare provider if there are any limits on physical stimulation and exercise.

• Let your child take part in everyday family activities as much as they can tolerate. Children also learn new skills from interacting with siblings and friends.

Teen years into adulthood

Great advances have been made in the treatment of children with congenital heart disease.

But these children are rarely “cured.” The most complex defects often need multiple medicines and other therapies. Complications may develop and repeat surgeries or procedures may be needed.

Issues related to lifestyle and well-being are important for these children. Such issues include:

• Independence

• College and career choice

• Marriage and family

• Pregnancy

• Ability to get health and life insurance

• Travel

• Relocation

Your child will need regular follow-up care during their life at a center offering adult congenital cardiac care.

Talk with your child's healthcare provider about the specific outlook for your child.