It’s normal to think that a diagnosis of congenital heart disease means that a child will spend a large part of their life apart. But if caught early, most heart defects can be treated and won’t stop a child from leading an active life.
What is congenital heart disease?
Heart disease or birth defects are structural problems of the heart that are present at birth. These defects usually develop early in pregnancy, when the heart begins to form around 6 weeks.
Heart defects usually disrupt or change the way blood circulates through the heart. There are a number of different types, which can differ in severity and involve different parts of the heart. About 25% of heart defects are considered critical, which means they require surgery or other procedures within the first year of life. The other heart defects are so mild that they don’t need treatment.
According to the Centers for Disease Control and Prevention (CDC), congenital heart defects are among the most common birth disorders, affecting nearly 1% of infants born in the United States each year.
Types of congenital heart disease
There are 18 recognized types of heart defects and many additional anatomical variations. Some affect the walls or valves of the heart, while others affect the arteries or veins around the heart. These include:
- Atrial septal defects (ASD)
- Atrioventricular canal defects
- Coarctation of the aorta (CoA)
- Hypoplastic left heart syndrome (HLHS)
- Pulmonary atresia
- Pulmonary stenosis (PS)
- Tetralogy of Fallot
- Abnormal total pulmonary venous connection (TAPVC)
- Transposition of the great arteries
- Tricuspid atresia
- Arterial trunk
- Interventricular communication
Some heart defects, such as interatrial communications and pulmonary stenosis, are considered simple because they usually do not require treatment. Others, like tetralogy of Fallot, are more complex and usually require surgery to be corrected.
The type of heart defect in a baby can be determined with the help of physical exams and special tests that can be done during pregnancy and after birth.
What are the symptoms of congenital heart disease in babies and children?
Symptoms of congenital heart defects differ depending on the type of defect and its severity. Simple heart defects may not show any signs or be detected until a child is older and gets tired or short of breath more easily than others during activity.
More serious heart defects usually occur in newborns and appear soon after birth or in the first few months of a baby’s life. They can cause symptoms such as:
- Rapid breathing or shortness of breath
- Heart murmurs or irregular heartbeat
- Unusual restlessness
- Shortness of breath during feedings, leading to poor weight gain
- Cyanosis, a bluish tinge of the skin, lips, and nails due to lack of oxygen
What are the causes of congenital heart disease?
Researchers are not sure exactly what causes birth defects in the heart. But there is some evidence that genetics are involved, as a parent who has a congenital heart defect is more likely to have a child with a heart defect. Some genetic diseases, such as Down syndrome, are also linked to congenital heart defects.
Other factors may also be at play. An infection like rubella during pregnancy can also increase the risk of congenital heart defects. The same goes for type 1 or type 2 diabetes (but not gestational diabetes), metabolic disorders like phenylketonuria or lupus. Smoking or drinking alcohol during pregnancy also increases the risk.
Certain medications are also linked to a higher risk of birth defects. These include anti-epileptic drugs, thalidomide, statins, lithium, ACE inhibitors for high blood pressure, isotretinoin for acne, especially during the first trimester. If you are taking these medicines and are pregnant or planning to become pregnant, talk to your doctor.
Treatment of congenital heart disease in children
The majority of congenital heart defects – if caught early and treated in time – can be repaired and managed, although many children need occasional check-ups with cardiologists throughout adulthood.
Long-term care from qualified specialists will help them stay active and maintain a good quality of life. While some children may need to limit their activity level or take precautions to prevent infection, most children can enjoy sports and play without a problem.
Treatment options depend on the type and severity of the heart defect – and the individual. Some minor congenital heart defects do not require treatment. For example, small holes between the heart chambers may close on their own as the child grows.
In other cases where the heart needs additional assistance, drugs are given to help the heart work better. For heart defects in babies or children that need to be physically repaired, doctors can often perform minimally invasive procedures like catheterizations, where long, thin tubes are threaded through the groin to the heart. In cases where minimally invasive procedures will not be effective, open heart surgeries or, in rare cases, heart transplants may be required.
Some babies and children with congenital heart defects have feeding problems and decreased appetite that can affect their growth. While breast and bottle feeding may be appropriate, it’s important to be flexible with your feeding method, as some babies may need supplementation to get the calories they need.
Babies and children with congenital heart defects are also more likely to have special needs or to experience delays in reaching developmental milestones (such as turning, sitting or walking). Depending on a child’s individual needs, specialists like nutritionists, physiotherapists or occupational therapists, speech-language pathologists can ensure children and families receive the proper care and support.
Congenital heart defects can be a frightening prospect. Thanks to advances in diagnosis and treatment, babies and children with congenital heart disease are thriving – and will likely continue to live a normal, healthy adult life.