Congenital heart disease

Congenital heart disease is a group of conditions (defects) that are present at birth. They may affect:

• Heart structures, including chambers and valves
• Blood vessels that deliver blood to and from the heart
• Blood flow through the heart

Children born with congenital heart defects typically live long, healthy lives. Doctors often detect defects before birth. This makes it possible to determine whether treatment is necessary, and if so, how soon. 

At Advocate Heart Institute, your child has access to the latest medical therapies. If a procedure is necessary, we excel in minimally invasive procedures that help them recover quickly. These are some of the reasons families put their trust in our team.

Types of congenital heart disease

There are many congenital heart disease types, including:

Common congenital heart defects

Defects that occur more frequently include:

• Atrial septal defect: The wall between the heart’s two upper chambers (atria) has a hole.

• Patent ductus arteriosus: Blood leaks out through an opening between the heart’s two major arteries.

• Pulmonary stenosis: The valve through which blood leaves the heart is abnormally narrow.

• Ventricular septal defect: The wall between the heart’s two lower chambers (ventricles) has a hole.

• Coarctation of the aorta: Narrowing restricts blood flow through the aorta.

Rare and complex congenital heart conditions

These conditions are less common and more complex. They may require treatment immediately after birth. 

Tetralogy of Fallot, which is a series of four defects:

1. Pulmonary stenosis
2. Ventricular septal defect
3. Overriding aorta: The heart’s main blood vessel (aorta) is out of place. It lies on top of the hole from the ventricular septal defect.
4. Right ventricular hypertrophy: Muscles in the right ventricles are abnormally thick from working harder than they should.

Other rare and complex congenital heart defects include:

• Ebstein’s anomaly: Positioning of the valve separating the heart’s right chambers is abnormal. 

• Hypoplastic left heart syndrome: The left side of the heart doesn’t develop properly. 

• Transposition of the great arteries: The heart’s two main arteries are in the wrong position. 

• Truncus arteriosus: There is only one large blood vessel coming out of the heart instead of two.

Symptoms of congenital heart disease

Many congenital heart defects do not cause symptoms. A doctor might detect signs of an issue while listening to your child’s heart for another reason. Symptoms may occur years after a child is born, sometimes in adulthood. 

Children with more severe heart defects tend to experience symptoms shortly after birth when they are breathing on their own. 

They include: 

• Nostrils that flare out while breathing
• Rapid breathing or heartbeat
• Skin that’s pale, gray or bluish
• Struggling to breathe while feeding
• Swelling in the legs, abdomen or near the eyes
• Unusual tiredness (fatigue)

Causes of congenital heart disease

Congenital heart disease occurs when the heart does not develop as it should before birth. Researchers are still exploring why this happens.

Factors that increase the risk of carrying a child with congenital heart disease include:

• Certain medications, like ACE (angiotensin-converting enzyme) inhibitors for high blood pressure
• Diabetes
• German measles
• Phenylketonuria (PKU), a rare disorder that causes buildup of an abnormal substance in the blood
• Smoking or using other forms of tobacco during pregnancy

Diagnosing congenital heart disease

Doctors may diagnose congenital heart disease before or after your child is born. At Advocate Heart Institute, you’ll find the expertise and technologies that help us accurately diagnose heart defects. Find out more about heart and vascular testing and diagnosis.

Prenatal diagnosis

Doctors may detect signs of congenital heart disease during prenatal imaging:

• Routine prenatal ultrasound (sonogram): This imaging test uses sound waves to evaluate developing organs, including the heart. If there are signs of a defect, additional testing may be necessary.

• Fetal echocardiography: This advanced evaluation also uses sound waves. It enables doctors to examine structures within the heart and blood flow through them.

Diagnosing heart defects after birth

Tests that help doctors diagnose heart defects after birth include:

• Cardiac catheterization: A procedure that uses thin tubes (catheters) with sophisticated tools at the tip to evaluate heart structures and functioning. Learn more about cardiac catheterization.

• Cardiac MRI: A powerful magnet and special technology provide real-time images for a detailed assessment of heart functioning.

• Chest X-ray: An X-ray shows whether heart muscles are becoming abnormally thick from working too hard.

• Electrocardiogram: This test evaluates the heart’s electrical activity. 

Treating congenital heart disease

The treatment that’s right for your child depends on the diagnosis and how severe it is. Care options may include:

Medications

Ibuprofen or acetaminophen may close patent ductus arteriosus. 

Minimally invasive procedures

For mild defects, doctors may use an interventional cardiology procedure to close holes from atrial septal defects. Doctors may also use these procedures to widen narrowed blood vessels from pulmonary stenosis.

Heart defect repair surgery

You may be a candidate for cardiovascular surgery. During a repair procedure, surgeons may:

• Close a hole in the heart
• Fix or replace a valve
• Put heart structures back into their natural position
• Widen narrowed blood vessels

Other congenital heart defect surgeries

Additional care options for complex defects or ones that do not respond to standard treatment include:

• Heart transplant: If your child’s heart can no longer do its job, this procedure replaces it with one from a healthy donor. Learn more about heart transplants.
• Palliative surgery: For children who are too sick to undergo repair surgery, this option provides relief. Palliative procedures improve oxygen flow which helps your child regain enough strength for additional treatments. 

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