Q: Why does ACHD matter—even in “asymptomatic” patients?
Thanks to advances in pediatric cardiology and cardiac surgery, more than 90% of children with CHD now survive into adulthood. There are now more adults living with CHD than children. Each carries a unique mix of anatomy, prior surgeries/interventions and evolving risk that differs fundamentally from acquired heart disease.
Patients who feel “fixed” may still face progressive arrhythmias, ventricular dysfunction, valve or conduit degeneration, pulmonary hypertension, or pregnancy-related risk. Specialized ACHD follow-up anticipates problems so they can be addressed before they cause symptoms.
Q: When should I refer to ACHD?
Earlier than expected. Even patients with simple defects or those who are doing well after childhood repair benefit from at least one consultation with an ACHD specialist. Many long-term complications are silent until advanced.
Refer now if an adult with CHD has:
- New or worsening exercise intolerance, dyspnea, cyanosis or fatigue
- Palpitations, syncope or documented arrhythmia
- Changes in ventricular size or function, valve dysfunction or suspected pulmonary hypertension
- Complex anatomy, prior conduit/valve replacements or residual shunts
- Anticipated or planned non-cardiac surgery
- Transition needs to bridge from pediatric to adult care
Shared care is ideal. Primary cardiologists and PCPs manage general cardiovascular health while ACHD specialists oversee congenital-specific imaging, EP, intervention timing, and reproductive planning.
Most adults with CHD should be followed periodically by an ACHD specialist. At the same time, care is often most effective when delivered collaboratively with general cardiologists and primary care physicians, particularly for patients who live at a distance or who develop common adult cardiovascular conditions such as hypertension, coronary disease or atrial fibrillation.
Q: What distinguishes an ACHD program from an individual ACHD provider? And how is the Cincinnati Children’s ACHD Program organized?
An ACHD provider contributes expertise; an ACHD program delivers coordinated, comprehensive, multidisciplinary care designed for lifelong CHD. Our program is built around the understanding that congenital heart disease will affect the patient for their whole life and that impact is often felt well beyond the heart.
Cincinnati Children’s ACHD Program:
- The region’s only Adult Congenital Heart Association Comprehensive Care Center.
- Integrated team: ACHD cardiologists, congenital imaging, interventional/EP specialists, HF experts, congenital cardiac surgeons, maternal fetal medicine, genetics, exercise physiology, psychology and neuropsychology.
- Robust training pathway for ACHD subspecialists and an active research program.
- A close partnership with the Heart and Mind Wellbeing Program at Cincinnati Children’s which integrates psychology and neuropsychology into cardiac care.
- Outreach clinics across OH/KY/IN and joint clinics with UC Health, Kettering, Good Samaritan and Christ Hospital.
- Whole patient focus: function, exercise capacity, arrhythmia prevention, pregnancy safety, heart failure mitigation and quality of life.
Q: What roles do PCPs and OB providers play?
A central role. Primary care and obstetric clinicians often first detect new symptoms, medication issues, pregnancy concerns, or gaps in follow-up. We collaborate with both the University of Cincinnati and Good Samaritan to host combined Cardio-Obstetrics clinics.
ACHD referral is not a handoff, but rather is the start of a partnership. Most patients continue general cardiac and primary care locally while ACHD provides congenital-specific surveillance and planning.
Q: What is the goal of an ACHD referral?
To identify and address problems before they escalate through:
- Lesion-specific surveillance
- Guideline-directed imaging and rhythm monitoring
- Early intervention planning (valves, arrhythmia management, HF therapy)
- Pregnancy risk stratification and delivery planning
- Clear, lifelong care plans for patients and community clinicians
ACHD care is not about medicalizing patients; it is about anticipation, reducing hospitalizations, preventing complications and supporting full, active adult lives.
Unsure if your patient needs ACHD care?
We welcome discussion or formal referrals.
Early referral = clarity, risk reduction and better long-term outcomes.
Alexander Opotowsky, MD, MMSc, is the Director of our Adult Congenital Heart Disease Program. He and his team care for adults with congenital heart disease. To contact them, call 513-803-2243.
(Published March 2026)
