How Congenital Heart Disease Affects Children

Ziva was born with ventricular septal defect.

Many parents have questions about how to help their children grow up healthy, happy and successful. When your child has congenital heart disease (CHD), those questions can feel even more important. Each stage of your child’s growth and development may bring new questions, needs and challenges.

Growth and feeding for babies with CHD

Feeding your baby provides the nutrition they need for growth and development. It is also a chance to bond through touch, communication and care. When your baby gains weight steadily and is thriving, it can be reassuring. However, some babies born with a CHD may gain weight more slowly than expected, even if they are feeding regularly.

Babies with CHD, especially those with heart failure or cyanosis, may gain weight more slowly than other babies. Cyanosis can cause the skin, lips or nails to look bluish or grayish. Your child’s healthcare team will monitor their growth over time.

Some factors related to CHD that may contribute to poor growth include::

• A fast heart rate, particularly in children with heart failure
• Rapid or labored breathing, which can make feeding more difficult
• Difficulty feeding
• Increased calorie needs
• Fatigue or shortness of breath during feedings
• Frequent respiratory infections, such as bronchitis or pneumonia
• Low oxygen levels in the blood

One of the most common reasons for slow growth is not getting enough calories or nutrients. However, some babies with CHD may gain weight slowly even when they are taking in enough calories because their bodies may have increased energy needs. Your baby’s pediatrician or cardiologist will monitor weight and growth at regular visits to assess your baby is growing as expected.

Find feeding tips for your baby.

Development, learning and school support

Some infants and children with CHD may have developmental delays, learning differences or other neurodevelopmental or educational needs. Talk with your child’s pediatrician and cardiologist about whether developmental screening, further evaluation, therapies or other support services may be helpful.

Many children with CHD attend their local schools and participate in typical school activities. Many do not have physical or cognitive challenges that limit participation in the school activities, while others may benefit from additional support or accommodations. Schools can work with families and healthcare professionals to help identify needed supports and provide accommodations or services when appropriate.

Many congenital heart centers also offer specialized programs to evaluate and support children who are at increased risk for developmental or learning challenges.

Physical activity and sports

Most children with congenital heart disease can participate in some form of physical activity. Physical activity can help children build strength and fitness and support their physical and emotional well-being.

Some children may need activity limits on certain activities based on their heart condition, symptoms, medical history, medications or implanted devices. Your child’s cardiologist can help decide:

• Which activities and sports are appropriate
• Whether recommendations need to change as your child grows

For more details, see Congenital Heart Disease and Physical Activity.