Adult Congenital Heart Disease Program
Lurie Children’s Heart Center offers the Adult Congenital Heart Disease (ACHD) Program to help give teenagers and adults who were born with heart defects the best cardiac care possible. Thanks to treatment advances most children with congenital heart disease (CHD) now survive into adulthood, yet they also require life-long cardiac monitoring for potential complications. Only about 10% of adults with CHD receive recommended care within an ACHD center, so our ACHD program staff are committed to facilitating access to care for adults with congenital heart disease.
We have a partnership with the ACHD program at the Bluhm Cardiovascular Institute at Northwestern Memorial Hospital to make the care integration process seamless. We also collaborate with the pediatric teams at Lurie Children’s Heart Center, which include our program for irregular heart rhythms (arrhythmia) — one of the nation’s foremost arrhythmia services for CHD.
Our program’s cardiologists have specific training and experience in caring for adolescents and adults with CHD, and are well prepared to provide life-long follow-up care for these patients. Major goals of our program are to educate the young adult on their heart problem, and to identify and treat problems early on before more serious consequences develop.
The Lurie Children’s Difference
While there are other ACHD programs in the Chicago area, our program is the only one with a director, Andrew deFreitas, MD, who is board-certified in both adult and pediatric cardiology. Our surgical director, Carl Backer, MD, is board-certified in adult Thoracic Surgery as well as Congenital Cardiac Surgery, and has 27 years’ experience caring for adults with congenital heart disease. The surgical outcomes for repair of congenital heart disease at Lurie Children’s are among the best in the nation, as reported by the STS. We offer a unique adolescent to adult care transition program that is customized for each patient.
When an adolescent patient is deemed ready for transition into the ACHD program, their pediatric cardiologist will refer them to an ACHD cardiologist at Lurie Children’s. As they grow older, many patients who stay in the greater Chicago area can transfer their care to Northwestern Memorial Hospital’s ACHD Program, while some with more complex cardiac conditions may benefit from continuing care at Lurie Children’s. This care coordination from pediatric cardiologist to ACHD cardiologist provides a seamless continuity of care and reduces risks of problems from multiple hand-offs to different physicians.
We prioritize information sharing and education efforts on behalf of other doctors about the care ACHD patients should receive. Lurie Children’s is a member institution of the Chicago Adult Congenital Heart Network (CATCH), which is a patient-centered, multi-institutional network of ACHD programs in the metro Chicago region. CATCH was created to help ensure that all adults with CHD in the area receive appropriate follow-up care in keeping with national practice guidelines.
What to Expect
Please have your cardiologist or referring physician send us your medical records at least two weeks before your appointment via mail or fax. Please request a CD/DVD copy of any recent cardiac imaging studies (e.g., echocardiogram, cardiac MRI, cardiac CT, cardiac angiograms) performed so we can review these studies before you arrive. With your permission, we can help facilitate obtaining your records from other institutions.
At your first appointment, you and your family will meet with your new ACHD cardiologist and our ACHD nurse practitioner. We will connect patients with services provided by the Northwestern ACHD program, such as psychological counseling, reproductive counseling or pregnancy management.
Our team is specially trained to care for the unique needs of adults with congenital heart disease. The team includes:
We also collaborate with our pediatric cardiology colleagues in Lurie Children’s Heart Center, including:
Dr. Andrew de Freitas, Director of Lurie Children's ACHD Program, is board-certified both in pediatric cardiology and in adult cardiovascular disease, and has nearly 15 years of experience in the field. He is an Assistant Professor of Pediatrics at Northwestern University Feinberg School of Medicine and the Pediatric Co-Director of the Northwestern Adult Congenital Heart Program.
Dr. Carl Backer is the Division Head of Cardiovascular-Thoracic Surgery. He is board-certified in Adult Thoracic Surgery and Congenital Cardiac Surgery, and is the A.C. Buehler Professor of Surgery at the Feinberg School of Medicine at Northwestern University. With Barbara J. Deal, MD, Division Head of Cardiology and Getz Professor of Cardiology, they have the country’s largest experience in integrating arrhythmia treatment into the surgical repair of congenital heart disease. This team pioneered Fontan conversion with arrhythmia surgery, improving quality of life and extending survival for patients with complex single ventricle anatomy.
Make an Appointment
To make your first appointment, please call Kara Barto at 312.227.4403.
Lurie Children’s ACHD Contact Information
Address: 225 E. Chicago Ave, Box #21
Chicago, IL 60611
Northwestern Memorial Office Information
Address: 675 N. St. Clair Street, Suite 19-100
Chicago, IL 60611
Learn more about adult congenital heart disease by visiting the following helpful websites:
The Division of Cardiology is committed to excellence in the care of young patients with congenital and acquired heart disease — from the fetus to the adult. Our mission is to foster a collaborative environment in which expertise in cardiac issues is cultivated through the promotion of research, education and prevention.