In a significant move for cardiac care, major American medical bodies have released updated guidelines to manage the growing population of adults living with congenital heart disease. This shift addresses a major success story in modern medicine: more than 90% of children born with heart defects now survive into adulthood, creating a new generation of patients requiring specialized, lifelong care.
Addressing a Growing Population: The Need for New Guidelines
On December 18, 2025, the American College of Cardiology and the American Heart Association unveiled a comprehensive update to their management guidelines for adults with congenital heart disease (ACHD), replacing the previous version from 2018. This new document incorporates critical evidence and research published between 2017 and 2024.
The driving force behind this update is a demographic milestone. Thanks to remarkable advances in surgical and medical care, over 1.4 million adults in the United States are now living with congenital heart defects. These range from simpler conditions to complex ones like tetralogy of Fallot or Eisenmenger syndrome. While childhood interventions are life-saving, many survivors face ongoing risks such as irregular heart rhythms, heart failure, reduced exercise capacity, and low oxygen levels later in life.
Dr. Michelle Gurvitz, a cardiologist at Boston Children’s Hospital and chair of the writing committee, emphasized the progress. “We have moved the field forward, in that we have more evidence than we did with the last set of guidelines,” she stated. The guidelines, published in the journals JACC and Circulation, were developed by a panel of experts across cardiology, surgery, and heart failure, with endorsements from groups like the Heart Rhythm Society.
Key Focus Areas: Specialized Care, Mental Health, and Exercise
A central pillar of the new guidelines is ensuring a smooth transition from pediatric to adult care and promoting lifelong follow-up at specialized ACHD centers. A major challenge is that many adults lose contact with specialized care due to factors like insurance coverage, geographical distance, or simply a lack of awareness about the need for continued monitoring.
“We still have a lot of patients who stop receiving specialized care as they transition… for reasons like insurance or geography,” Dr. Gurvitz noted. To improve access, the guidelines recommend that ACHD cardiologists collaborate closely with general physicians, particularly for patients with moderate or complex defects. This coordinated approach is vital for preventing complications as patients age, even into geriatric care where specific research is still lacking.
The update also brings much-needed attention to mental health. Adults with ACHD frequently experience anxiety, depression, and cognitive issues that often go unaddressed. The new guidelines strongly advocate for routine mental health screening and timely referrals to appropriate care. “Our patients have a lot of challenges with anxiety and depression, so it’s important to discuss that,” Gurvitz explained.
Furthermore, the guidelines transform the approach to physical activity. Moving away from outdated fears that discouraged exercise, doctors are now encouraged to promote activity after a proper evaluation. Exercise testing can help determine safe levels, and for some, even competitive sports are encouraged. The document explicitly states that adults with CHD are not just ‘allowed’ to play, they are actively encouraged to engage in physical activity.
Pregnancy Planning and Specific Treatment Pathways
For women with congenital heart disease, the guidelines provide clear direction on family planning. They recommend preconception counseling with an ACHD specialist to discuss genetic risks, potential pregnancy complications, and delivery options. With proper monitoring, most women can have a vaginal delivery.
The update also covers specific treatment pathways, including:
- Updated recommendations for birth control and heart failure therapies.
- Management of specific defects like bioprosthetic valve issues or atrial septal defects.
- Clearer timing for liver screenings in patients who have had a Fontan procedure.
While the guidelines address the potential need for later interventions like valve replacements, pacemakers, or transplants, they also highlight areas requiring more research, such as optimal timing for these procedures.
Looking ahead, as this patient population continues to grow—especially those with complex conditions—these evidence-based guidelines aim to standardize and improve care delivery. They represent a crucial step in blending robust medical evidence with the real-world needs of adults born with heart defects, promising them a better quality of life throughout their years.
