It’s normal to think that a diagnosis of congenital heart disease means a child will spend much of their life on the sidelines. But if detected early, most heart defects are treatable and won’t stop a child from living an active life.
What is congenital heart disease?
Congenital heart diseases or defects are problems with the heart’s structure that are present at birth. These defects typically develop early in pregnancy, when the heart begins forming around 6 weeks.
Heart defects typically disrupt or change the way that blood flows through the heart. There are a number of different types, which can differ in severity and involve different parts of the heart. Around 25 percent of heart defects are considered critical, meaning they require surgery or other interventions within the first year of life. Other heart defects are so mild that they don’t require any treatment at all.
Congenital heart defects are among the most common birth disorders, affecting nearly 1 percent of infants born in the U.S. each year, according to the Centers for Disease Control and Prevention (CDC).
Types of congenital heart disease
There are 18 recognized types of heart defects and many additional anatomic variations. Some affect the heart’s walls or valves, 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
- Total anomalous pulmonary venous connection (TAPVC)
- Transposition of the great arteries
- Tricuspid atresia
- Truncus arteriosus
- Ventricular septal defect
Some heart defects, like atrial septal defects and pulmonary stenosis, are considered simple because they don’t typically require treatment. Others, like Tetralogy of Fallot, are more complex and typically require surgery to be corrected.
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The type of heart defect a baby has can be determined with physical exams and special tests that can be conducted both during pregnancy and after birth.
What are the symptoms of congenital heart disease in babies and children?
Congenital heart defect symptoms differ based on the type of defect and its severity. Simple heart defects may not show any signs at all or may not be spotted until a child is older and gets tired or short of breath during activity more easily than others.
More severe heart defects usually occur in newborns and show up shortly after birth or within 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 fussiness
- Fatigue
- Shortness of breath during feedings, leading to poor weight gain
- Cyanosis, a bluish tint to skin, lips and nails due to lack of oxygen
What causes congenital heart disease?
Researchers aren't entirely sure what causes congenital heart defects. But there is evidence that genetics is involved, since a parent who has a congenital heart defect has a higher chance of having a child with a heart defect. Some genetic conditions, such as Down syndrome, are linked with congenital heart defects as well.
Other factors may be at play, too. Experiencing an infection like rubella during pregnancy can also increase the risk for congenital heart defects. So, too, can having type 1 or type 2 diabetes (but not gestational diabetes), metabolic disorders like phenylketonuria or lupus. Smoking or drinking alcohol while pregnant also increases the risk.
Certain medications are also tied to a higher chance for congenital birth defects. These include antiseizure medications, thalidomide, statins, lithium, ACE inhibitors for high blood pressure, isotretinoin for acne, particularly during the first trimester. If you take these medications and are pregnant or planning on becoming pregnant, talk with your doctor.
Treatment for congenital heart disease in children
The majority of congenital heart defects — if detected early and treated in time — can be repaired and managed, though many children will need occasional checkups with cardiologists through their adult life.
Long-term care from trained 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 infections, most kids are able to play sports and games with no problem.
Treatment options depend on the type and severity of the heart defect — and the individual. Some minor congenital heart defects need no treatment at all. For instance, small holes between the chambers of the heart may close on their own as a child gets older.
In other cases where the heart needs additional assistance, medication is 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 in the groin up to the heart. In cases where minimally invasive procedures won’t be effective, open-heart surgeries or, in rare cases, heart transplants may be needed.
Some babies and children with congenital heart defects have feeding problems and diminished appetites that can affect their growth. While both breast- and bottle-feeding can be appropriate, it’s important to be flexible with your feeding method, since some babies might require supplementation to get the calories they need.
Babies and children with congenital heart defects are also more likely to have special needs or experience delays reaching developmental milestones (like rolling over, sitting up or walking). Depending on a child’s individual needs, specialists like nutritionists, physical or occupational therapists, speech therapists can ensure children and families get the right care and support.
Congenital heart defects can be a frightening prospect. Thanks to advances in diagnostics and treatment, babies and children with congenital heart disease are thriving — and will likely go on to live normal, healthy adult lives.
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