Children with congenital (present at birth) heart disease may grow or develop more slowly than other children. For example:
Your child may look much younger, thinner, and, perhaps, more frail than other children the same age.
Your child's healthcare provider may tell you that your child's height and weight are lower that most children their age.
Your child may be slower to reach developmental milestones than healthy children, such as rolling over, sitting, walking, talking, and toilet training.
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. Even though your child needs more calories just to maintain weight, he or she may be too tired to eat enough.
Your child may not be able to absorb nutrients properly (malabsorption) because the intestines aren't getting enough oxygen.
Doctors, nurses, and nutritionists can help develop a plan to make sure that your child gets enough nutrition to meet his or her 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 that needs to take in more calories and nutrients to grow. Your healthcare provider may give tube feedings through a small, flexible tube that passes through the nose, down the esophagus, and into the stomach. In some cases where tube feedings may be a more chronic issue, the doctor may put a tube directly into the stomach through the belly (abdominal) wall. Infants may be able to drink what they can from a bottle, and then are 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, and 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, but 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 doctor, nurse, or nutritionist for more ideas.
Children with congenital heart disease may fall behind in their development for several reasons. These include:
Genetic problems linked to heart defects also affect thinking 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 doesn't meet the body's energy requirements. This 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 help with 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 provide guidelines that are tailored for each child. Some ways that parents can encourage the development of their children include:
Touching and talking to your child can soothe him or her and give reassurance, especially in the intensive care unit or right after surgery, even if he or she has 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 he or she is 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 he or she can tolerate. Children also learn new skills from interaction with brothers, sisters, and friends.
Great advances have been made in the treatment of children with congenital heart disease.
But these children are rarely “cured,” and 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:
College and career choice
Marriage and family
Ability to get health and life insurance
Your child will need regular follow-up care at a center offering adult congenital cardiac care throughout life.
Talk with your child's healthcare provider about the specific outlook for your child.