Adult Congenital Heart Disease (ACHD) Program

Today, children who are born with heart problems have a better prognosis than ever. But even as adults, they still need special cardiology care.

Adult congenital heart disease (ACHD) specialists provide this care. Unlike typical cardiologists, they have special training in adult congenital cardiology.

As one of the top ranked children’s hospitals in cardiology and heart surgery, Lurie Children’s offers this specialty. In our ACHD Program, we see patients who have been with us since birth as well as patients who find us as adults.

What is Adult Congenital Heart Disease?

About one percent of babies are born with a congenital heart condition. This means they have a problem with the structure or the function of their heart. We specialize in repairing these heart problems and managing them throughout both childhood and adulthood.

Doctors diagnose most congenital heart disease during pregnancy or shortly after birth. But about 10 percent of the time, the diagnosis is missed. This happens most often with these conditions:

• Atrial septal defect (ASD): This opening between the heart’s two upper chambers is sometimes discovered after someone has had a stroke.
• Coarctation of the aorta: Although this condition obstructs blood flow, a person’s arteries can compensate for a long time. A cardiologist may spot this on an echocardiogram.
• Partial anomalous pulmonary vein return (PAPVR): This is when the pulmonary vein isn’t properly connected to the left side of the heart. A cardiologist might order an MRI if a patient has fatigue or an abnormal heartbeat and discover it.

At Lurie Children’s, we’re able to successfully repair these and other congenital heart disease conditions well into adulthood.

Transitioning from Pediatric to Adult Congenital Heart Disease Care

When an adolescent patient is ready for transition into the ACHD program, their pediatric cardiologist will refer them to an ACHD cardiologist at Lurie Children’s. This can happen as young as age 15, through our unique adolescent to adult care transition program. 

Because our program is part of the pediatric cardiology department, a teen doesn’t have to say goodbye to the cardiologist they’ve known their whole life. We all work together. This continuity of care from pediatric cardiologist to ACHD cardiologist avoids the problems that come with multiple hand-offs to different physicians. 

We guide adolescents through their new adult world, having conversations and counseling them on:

• Family planning and contraception
• The risks of drug and alcohol use
• How their heart condition might impact their career decisions
• The importance of keeping a healthy lifestyle and what kinds of exercise are safe for them
• How to take ownership over their care, especially if they’ll be away at college

How We Care for Adults With Congenital Heart Disease

For adults who are new to Lurie Children’s, we’ll do the legwork of getting your pediatric records. Our team are experts in this task. To start the process, fill out and sign this release form and email it to ACHD@luriechildrens.org.

If you’re an adult with congenital heart disease and you’re contemplating pregnancy, we’ll help you understand any risks. We can work with your OB/GYN to monitor you before, during and after pregnancy.

We also perform revision and valve replacement surgeries. Pulmonary valve replacement is the most common ACHD surgery — especially for adults who had tetralogy of Fallot as babies.

We’re one of a handful of hospitals to offer transcatheter pulmonary valve replacement. If you had a pulmonary valve operation as a child and it needs to be replaced, this procedure offers a less invasive option than surgery.

Why Choose Lurie Children’s for Your ACHD Care?

A destination center serving greater Chicago area and beyond, count on us for:

• Comprehensive heart care: U.S.News & World Report consistently ranks Lurie Children’s among the top children’s hospitals for cardiology and heart surgery. From birth through adulthood, we treat the full range of heart conditions.
• Partnership with Northwestern Medicine: Our doctors and advanced practice providers have privileges at Northwestern Memorial Hospital. We’re able to confer with any other adult specialist you need.
• Excellent outcomes: If you need to have heart surgery or a heart procedure, our outcomes are among the best in the nation.
• Accessible team: Our adult congenital cardiologists, advanced practice providers and nurses are available for questions about everything from symptoms to dentist appointments.