Adult Congenital Heart Disease (ACHD)

Children born with congenital heart disease are living longer, healthier lives than ever before. The Centers for Disease Control and Prevention estimates that close to 1.4 million people in the U.S. have adult congenital heart disease (ACHD). These adults require special ongoing care.

The specialists at Norton Children’s Heart Institute, affiliated with the UofL School of Medicine, are your partner for ACHD care for a lifetime. The Society of Thoracic Surgeons has rated Norton Children’s Heart Institute’s pediatric heart care among the best in the region.

Our team is skilled in caring for your congenital heart condition and how it affects you as an adult.

What Is ACHD?

Congenital heart disease refers to an issue with the heart’s structure and function that is present at birth. Adults also can have congenital heart disease, from a structural issue that was not found earlier in life to conditions related to the continued care of the original heart lesion. Children with congenital heart disease continue to need care as they grow older and throughout adulthood.

Even if you had successful treatment as a child, symptoms related to the original heart condition can occur later in life. New issues related to congenital heart disease also can appear. Your cardiologist will work with you to decide how often you should get care for your condition.

At Norton Children’s Heart Institute:

  • We provide you with all the heart care you need in one place for life. We provide comprehensive heart care for children and adults with congenital heart disease. You’ll also find extensive collaboration with specialists across the Norton Healthcare system to make sure you have a seamless health care experience.
  • We provide you with the care, education and support you need as you age with your condition. We want you to experience the best health possible from your childhood years to your golden years.

Symptoms of Congenital Heart Disease Complications in Adults

Some congenital heart defects cause no signs or symptoms. For some people, signs or symptoms occur later in life. They can reappear years after treatment for a heart defect.

Common congenital heart disease symptoms you might have as an adult include:

  • A blue tint to the skin, lips and fingernails (cyanosis)
  • Tiring easily
  • Irregular heart rhythms (arrhythmias)
  • Shortness of breath
  • Swelling of body tissue or organs (edema)

For some adults with congenital heart disease, the initial heart defect can recur or worsen with age. Issues in the heart that were not serious enough to repair as a child can get worse over time and need care later. Complications from childhood surgeries can cause issues as a person ages as well, such as scar tissue or an irregular heartbeat.

Environmental and genetic risk factors can play a role in who develops a congenital heart defect, including:

  • German measles (rubella): If a woman had rubella while pregnant, it may have affected the child’s heart development.
  • Diabetes: Mothers with Type 1 or Type 2 diabetes may have children with heart issues. Gestational diabetes generally does not increase congenital heart disease risk.
  • Family history: Congenital heart disease appears to run in families and is associated with many genetic syndromes. For instance, children with Down syndrome often have heart defects. Genetic testing can detect Down syndrome and other disorders during a baby’s development.
  • Lifestyle choices: Drinking alcohol and smoking while pregnant can increase the risk of a baby developing heart defects.
  • Medications: Taking certain medicines while pregnant can cause congenital heart and other birth defects, including medicines to treat acne or lithium to treat bipolar disorder.

Diagnosing Adult Congenital Heart Disease

A cardiologist will examine you to determine whether any current health issues are related to your congenital heart disease. Your Norton Children’s Heart Institute cardiologist may run several tests and other procedures, including:

  • Cardiac MRI (magnetic resonance imaging): This test uses radio waves, magnets and a computer to form 3D pictures of the heart. These pictures can show structural issues (such as an enlarged ventricle).
  • Chest X-ray: This shows pictures of the heart and lungs, and can show an enlarged heart and extra blood flow or fluid in the lungs. This test can show how heart failure is progressing.
  • Echocardiogram: This test uses sound waves (ultrasound) to produce images of the heart and blood vessels’ structures on a screen. It can show the structure and function of the heart. Norton Children’s Heart Institute has 28 tele-echo locations throughout Kentucky and Southern Indiana.
  • Electrocardiogram (ECG or EKG): This test checks the heart’s electrical activity to show damage or irregular rhythms.
  • Heart catheterization: This invasive procedure studies the structure, function and provides direct pressure measurements of the heart.

Adult Congenital Heart Disease Treatment

Depending on your specific congenital heart issue and its severity, treatment could either be correcting the heart defect or managing complications caused by it. Common treatments include:

  • Catheterization: Some heart defects can be treated by special cardiac catheterization procedures, allowing a surgical heart repair without opening the chest or heart.
  • Medications: Medicines may help prevent blood clots, remove excess fluid or control a heart rhythm issue.
  • Monitoring: Minor heart conditions may need only routine checkups with a cardiologist to make sure there are no changes.
  • Implantable heart devices: Devices such as a pacemaker, implantable cardioverter-defibrillator (ICD) and others can help with symptoms of congenital heart defects.

Why Choose Norton Children’s Heart Institute

No other congenital heart surgery program in Kentucky, Ohio or Southern Indiana is rated higher by the Society of Thoracic Surgeons than the Norton Children’s Heart Institute Pediatric Cardiothoracic Surgery Program.

  • Norton Children’s Hospital has been a pioneer in pediatric cardiothoracic surgery, performing Kentucky’s first pediatric heart transplant in 1986 and becoming the second site in the United States to perform an infant heart transplant.
  • Our board-certified and fellowship-trained pediatric cardiovascular surgeons are leaders in the field as clinicians and researchers.
  • More than 5,000 children a year visit Norton Children’s Heart Institute, affiliated with the UofL School of Medicine, for advanced heart care.
  • Norton Children’s Heart Institute successfully performs more than 17,500 procedures a year.
  • The Society of Thoracic Surgeons rated Norton Children’s Heart Institute among the best in the region after studying years of our patients’ outcomes and our ability to treat a range of pediatric heart conditions, including the most severe.
  • Norton Children’s Heart Institute has satellite outpatient offices in Ashland, Bowling Green, Campbellsville, Elizabethtown, Frankfort, London, Madisonville, Murray, Owensboro, Paducah and Shepherdsville in Kentucky; as well as Corydon, Jasper, Madison and Scottsburg in Indiana; 28 tele-echocardiography locations in Kentucky and Southern Indiana; and six fetal echocardiography locations across Kentucky.
  • The American Board of Thoracic Surgery has awarded the cardiothoracic surgeons at Norton Children’s Hospital with subspecialty certification in congenital heart surgery.
  • The Jennifer Lawrence Cardiac Intensive Care Unit (CICU) is the largest dedicated CICU in Kentucky, equipped with 17 private rooms and the newest technology available for heart care.
  • Our multidisciplinary approach to pediatric heart surgery brings together our specialists in cardiothoracic surgery, cardiology, anesthesiology, cardiac critical care and other areas to create a complete care plan tailored for your child.
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Nurse with ACHD cares for kids with congenital heart disease

When Ashley Eastman, R.N., has an appointment to monitor her adult congenital heart disease (ACHD), she simply leaves her desk, walks to the front desk, checks in, and waits to be called. As a nurse […]

Read Full Story

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As an adult with congenital heart disease, a 27-year-old is giving back

To look at Samantha Stallings today as an active, working adult, you would never know that she’s been fighting for her health all 27 of her years. Her journey with Norton Children’s began the day […]

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Walter L. Sobczyk, M.D., pediatric cardiologist with Norton Children’s Heart Institute, affiliated with the University of Louisville, has treated hundreds of children born with life-threatening heart abnormalities. Thanks to advances in surgery and treatment over […]

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Nurse with ACHD cares for kids with congenital heart disease

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Read Full Story

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In 1940, children born with severe congenital heart disease (CHD) had less than a 10% chance of living to age 18. Over the years advanced new treatments, including surgeries, were developed. Survival rates improved: Children […]

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