Helping Children Thrive With Congenital Heart Disease

If your child has congenital heart disease, we know that you’ve put your heart and soul into helping them live their best life. You’ve stopped at nothing to get them the best medical care, and you’re doing everything in your power to help them live each childhood moment with the best possible health — in body, mind and spirit. While congenital heart disease can affect your child’s growth and development, there are some things you can do to help them thrive.

Developmental Milestones

Children with congenital heart disease, which is present at birth, may grow or develop more slowly than other children. Because of their condition or factors related to it, it’s possible that your child looks younger compared to other children the same age.

It’s also common for children with congenital heart disease to have delays in their physical development, leading to a lower than average height and weight and delayed milestones, such as rolling over, sitting up, walking, talking and even potty training down the road.

This is usually influenced by many reasons, but it can include genetic abnormalities that affect motor development, inadequate nutrition and frequent, prolonged hospital stays and procedures.

Tips to Support Your Child’s Development

As a parent, we know you’re rooting for your child with all that you have. It’s important to focus on the positive and what they can do. And talk to your child’s pediatrician, cardiologist and team of specialists about developing a personalized plan that outlines safe ways to support your child’s physical, social, cognitive and emotional development.

Here are some things you can do to help.

Playful Interactions

Touching and talking to your child can soothe him or her and give reassurance, especially in the hospital or right after surgery.

Physical Activity

Always follow your child’s doctor’s orders for physical activity and encourage the activities your child enjoys and can tolerate well.

Sensory Play

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 in the hospital, including Child Life Specialists.

Normalize Life

Let your child take part in everyday family activities as much as he or she can tolerate. Children also learn new developmental skills from interaction with brothers, sisters and friends.

Meeting Nutritional Needs

For every child, good nutrition supports physical, social and emotional development. But for children with congenital heart disease, nutritional needs can be greater. This is because the heart must pump faster to meet the body's demands.

Under these conditions, the body's metabolism is also faster. So, your child likely needs extra calories to maintain weight and grow. In addition, your child may not absorb nutrients properly because the intestines aren't getting enough oxygen.

Since your child’s body may be working harder to compensate for the heart defect, they may become tired quickly. This means that infants can get sleepy during feedings or even sleep through them.

Older children may pick at their food, say they are 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.

If you’re experiencing any of these issues, it’s important to work with your child’s team of doctors, nurses and nutritionists who can develop a plan to make sure your child gets enough nutrition.

Here are some helpful tips to enhance your child’s nutrition and well-being.

Ways to Boost Your Child’s Nutrition

Nutritional Supplements

You may be able to add special nutritional supplements to formula or pumped breast milk 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.

Talk to your child’s pediatrician or cardiologist about products you are considering so they can ensure the products are safe for your child.

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 child’s healthcare provider may recommend 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 needed more long-term, the doctor may put a tube directly into the stomach through the belly. 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 breast milk through the feeding tube alone. Older children may need tube feedings at night and eat normally 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. Nutrition labels can help you understand the calorie content of foods. For instance, you may be surprised to learn that 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 calories. Limit foods that have empty calories, such as foods with a lot of sugar and few nutrients like soft drinks, chips and fast foods. Instead, focus on offering a balanced diet, as well as one higher in calories. Ask your child's doctor, nurse, or nutritionist for more creative, healthy ideas tailored to your child’s needs.

Thriving Into Adulthood

Because great advances have been made in the treatment of congenital heart disease, many children are thriving well into adulthood. However, it is important to keep in mind that many complex heart defects often need multiple medicines and other lifelong therapies. In addition, repeat surgeries or procedures may be needed.

As such, it’s normal to find challenges as your child gains more independence with different life stages. Some of the things that are important to discuss as a family and with your child’s medical team can include:

• Living independently
• College and career choices
• Marriage and family planning
• Maintaining health coverage
• Finances
• Travel or relocation

Since your child will need lifelong regular follow-up care, it’s important to find a trusted medical center offering adult congenital cardiac care that is your partner in whole-health care throughout every stage of life.

Learn more about AdventHealth’s network of advanced Heart and Vascular Care.