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, frailer than other children the same age.
Your child's doctor may tell you that your child's height and weight are in lower "percentiles," meaning that a significant number of children in the United States are taller and/or heavier than your child.
Your child may be slower to reach developmental milestones than healthy children, such as rolling over, sitting, walking, talking, and toilet-training.
Nutritional issues impact growth and development in children with congenital heart disease:
Hearts that pump inefficiently due to a congenital heart defect must also pump more rapidly to meet the body's needs. The body's metabolism is faster under these conditions, and therefore, extra calories are needed in order for a child with congenital heart disease to maintain weight and grow.
Children with congenital heart disease may become tired quickly since their bodies are working harder under the stress of the heart defect. They may not have enough energy to eat properly. 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 more calories are needed just to maintain weight, these children are may be too tired to eat enough.
Doctors, nurses, and nutritionists can help develop a plan to ensure that your child gets enough nutrition to meet his or her body's needs. Suggestions may include the following:
High-calorie milk, formula, or breast milk. Special nutritional supplements may be added to formula or pumped breast milk to increase the number of calories in each ounce, thereby allowing your baby to drink less and still consume 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 in order to grow. Tube feedings are given through a small, flexible tube that passes through the nose, down the esophagus, and into the stomach. Infants may be allowed 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 receive their formula or breast milk through the feeding tube alone. Older children may receive tube feedings at night, and be allowed to eat what they like 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, while others have many. Healthy foods such as vegetables may not have very many calories, but adding some melted cheese or dip can boost the calorie content. Avoid giving your child foods that have empty calories -- 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 additional suggestions.
Children with congenital heart disease may fall behind in their development for several reasons, including:
Associated genetic syndromes also affecting cognitive and motor development.
Inadequate nutrition does not meet the body's energy requirements, or allow for proper growth and development of muscles, bones, and brain and nerve cells.
Inadequate nutrition does not meet the body's energy requirements, causing children to tire quickly or not be able to physically keep up with others their same age.
Illness and frequent, or prolonged, hospitalizations may prevent the child from receiving stimuli that help with development, such as being played with, talked to, held, or touched.
Parents of children with congenital heart disease can play an active role in promoting the development of their child, at home or in the hospital. Doctors, nurses, physical therapists, and other health care team members will provide appropriate guidelines that are tailored for each child. Some ways that parents can encourage the development of their children may include the following:
Touching and talking to your child can soothe him or her and provide 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 doctor.
Provide your child with a variety of toys and other objects that stimulate his or her 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 be of assistance in providing exercises that are safe for children of all ages to encourage their development. Ask your child's doctor or nurse if there are any limitations regarding physical stimulation and exercise.
Allow your child to participate in everyday family activities, within his or her physical limitations. Children also learn new skills from interaction with brothers, sisters, and friends.
Advances in the treatment of children with congenital heart disease have grown tremendously.
These children, however, are seldom “cured,” and the most complex defects often require multiple medications and other therapies. Complications may develop and repeat interventional and/or surgical procedures may be required.
Issues related to lifestyle and well-being are important for these children. Such issues include, but are not limited to, the following:
College and career choice
Marriage and family
Insurability (ability to get health and life insurance)
Regular follow-up care at a center offering adult congenital cardiac care should continue throughout life.
Consult your child's doctor regarding the specific outlook for your child.