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 University of Louisville, will be your partner for ACHD care for a lifetime. The Society of Thoracic Surgeons has ranked 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 a problem with the heart’s structure and function that is present at birth. Adults can also have congenital heart disease, from a structural problem that was not found earlier in life, or related to the continued care from their original heart lesion. Children with congenital heart disease continue to need care for their condition 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 and the University of Louisville 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 now. 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 heart development.
  • Diabetes: Mothers with Type 1 or Type 2 diabetes may have children with heart issues, although 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 while pregnant 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 three-dimensional 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 Norton Children’s Heart Institute?

Norton Children’s Heart Institute, affiliated with the University of Louisville, is a comprehensive pediatric heart surgery, heart failure and heart transplant program serving Kentucky, Southern Indiana and beyond.

The goal of the full-service Norton Children’s Heart Institute is to provide care for the child and the whole family. Our specialists are prepared to repair even the most complex congenital and acquired heart conditions.

Our heart team includes:

  • Pediatric cardiothoracic surgeons
  • Pediatric transplant surgeons
  • Pediatric cardiologists
    • Fetal cardiologists
    • Adult congenital heart cardiologists
    • Heart failure/heart transplant cardiologists
    • Pediatric electrophysiologists
    • Pediatric cardiac catheterization cardiologists
  • Pediatric cardiovascular anesthesiologists
  • Pediatric intensive care physicians
  • Cardiac critical care nurses
  • Critical care pharmacists
  • Family support team
  • Child life specialists
  • Rehabilitation specialists
  • Social workers
Heart – 2929

Norton Children’s Heart Institute

Call for an appointment

(502) 629-2929

New parents: What to do about health insurance for kids

Some of the most frequently asked questions pediatricians hear from new parents are about health insurance. Below are some tips to help you establish insurance while making sure your baby’s medical needs are met in […]

Read Full Story

Norton Children’s is giving away tickets to Festival of Trees & Lights

Start a holiday tradition with your family at the 30th annual Festival of Trees & Lights, Nov. 15 to 17. Marvel at the hundreds of beautifully decorated trees, wreaths and décor items — all of […]

Read Full Story

3 ways to lock down your medications

Nearly 8,000 calls came into the Kentucky Poison Control Center of Norton Children’s Hospital in 2018 as a result of concerns about children under 5 ingesting medication. Calls involve kids getting access to medication they […]

Read Full Story

Baby elephant’s name to be unveiled by toddler with a new heart

In Eli Alexander’s 23 months of life, he has overcome a congenital heart defect with the help of a heart transplant. His family has taken to comparing his strength and bravery to an elephant’s. It […]

Read Full Story

Courageous Clay gets his heart transplant follow-up visits closer to home in Bowling Green

Nicole Pendino has a courageous son. In fact, his nickname is “Courageous Clay.” Many members of his hometown community in Bowling Green, Kentucky, have rallied around him over the past 12 years. In 2017 when […]

Read Full Story

Search our entire site.