Managing congenital heart disease (CHD)

Congenital heart disease – or CHD – refers to a heart defect that is present at birth. Understanding and managing a life-long condition can be a challenge. But Karl Reyes, M.D., a thoracic and cardiovascular surgeon at Children's Health℠, shares information to help patient families manage CHD.

What is congenital heart disease (CHD)?

CHD is a term used to describe a group of heart defects present at birth. They occur when the baby is developing. These defects affect both the structure and function of the heart. There are different types of CHD. Some common types include:

• Atrial septal defect (ASD) and ventricular septal defect (VSD) – these types involve holes in the walls that separate the heart's chambers
• Tetralogy of Fallot – a combination of four heart defects causing oxygen-poor blood to flow to the body
• Coarctation of the aorta – a narrowing of the aorta
• Transposition of the great arteries – the two main arteries leaving the heart are switched
• Hypoplastic left heart syndrome – a condition where the left side of the heart is underdeveloped

Do all types of CHD require treatment?

Not all types of congenital heart defects will require treatment. Some defects may be small or mild enough not to cause any significant health problems. For instance, a small ventricular septal defect may not require treatment because it may close on its own or not cause any symptoms.

However, babies born with some types of CHD, such as hypoplastic left heart syndrome, do undergo surgery – perhaps even in their first days of life.

Sometimes, a baby can live without any correction for a short time and then will need surgery a few months or years later. "And some babies with much more complex defects may need more than one surgery," explains Dr. Reyes.

Specialists are constantly learning more about CHD and developing new techniques for repairing defects. With proper medical care, many children with CHD lead normal, healthy lives. "The survival rate for those who receive treatment for CHD is now greater than 98%," Dr. Reyes says.

Possible complications of CHD

Having CHD can lead to complications and other health problems if not properly managed. It does depend on the type and severity of the condition. "Even with proper treatment, in some cases, CHD can cause lifelong limitations," Dr. Reyes says. Some possible complications of CHD include:

• An abnormal heart rhythm, causing the heart to beat too fast, too slow or irregularly
• Pulmonary hypertension
• Cyanosis, a blueish tint to the skin, lips and nails caused by a lack of oxygen in the blood
• Problems with other organs
• Infection of the inner lining of the heart, also called endocarditis
• The heart works harder than it should and can lead to heart failure

Ongoing management for CHD

The goal of ongoing CHD care is preventive management, reducing complications, avoiding emergencies and improving quality of life. "Patients should be vigilant and maintain regular check-ups with their cardiologists and other doctors," Dr. Reyes says.

Even if a child's CHD has been surgically corrected or is considered mild, they may still be at risk for complications later in life. Regular check-ups with a pediatric cardiologist can help identify any changes or progression, monitor heart function and detect any potential complications early on. Ongoing care and support also help children and parents understand any needed lifestyle changes, including healthy eating, exercise and counseling to manage CHD's emotional and social impacts.

Dr. Reyes stresses the importance of seeking care at an accredited congenital heart program. These comprehensive programs offer access to all needed specialists in one location and account for whole-person management of CHD. They provide the entire spectrum of care for the disease and all the specialty providers that play an important role in care.

CHD is complex and can affect all areas of an individual's life, including social and emotional impacts. Comprehensive CHD programs – like the one offered at Children's Health – also provide ancillary services, social workers and case managers who can help people with heart defects access vital resources, such as community support and educational and training opportunities.

Working with a multidisciplinary CHD team can help people become and stay the healthiest they can be.

Transitioning from pediatric to adult care for CHD

With more than 2 million adults in the U.S. alone living with CHD, it's important they have access to the expert, comprehensive care they need to manage these complex conditions over their lifetime.

"The transition to adult care is fairly complex," Dr. Reyes explains. "Patients need a cardiologist to follow them long-term. People with CHD need ongoing surveillance and, in some cases, additional surgical correction later in life." At Children's Health, the only accredited Adult Congenital Heart Disease Program in North Texas, the CHD team is here to help with a seamless transition from pediatric CHD care to adult CHD care. Our pediatric providers work closely with our adult providers and can coordinate the care transition.

Adult CHD programs offer management and support for additional concerns people with CHD entering adulthood may have.

Get support

Learn more about congenital heart defects and the health care services and programs available to support families affected by this condition.