Adult Congenital Heart Disease (ACHD) Care Guidelines

As an adult who was born with a congenital heart defect, you can better advocate for your lifelong heart health by getting familiar with the basics of adult congenital heart disease (ACHD) care. On this page, ACHA will share what you need to know and help you tap into skills that will help you talk with your healthcare team and anyone who has power over policies and funding for congenital heart disease (CHD).

In December 2025, several health groups released new guidelines to help heart doctors offer the best possible treatment to adults with congenital heart disease. Guidelines for managing ACHD were first released in 2008 and revised in 2018. The newest version, the 2025 AHA/ACC/HRS/ISACHD/SCAI Guideline for the Management of Adults with Congenital Heart Disease, includes the latest research from 2017–2024.

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Why does ACHD need treatment guidelines?

Guidelines help ACHD doctors stay up to date. They also give general heart doctors the knowledge they need to care for adults with CHD. The guidelines encourage general heart doctors to work closely with ACHD specialists as a team. Together, they can make sure all adults with CHD in the U.S. get the right care. Teamwork is key to helping adults with heart defects live healthier lives.

What do I most need to know about ACHD treatment guidelines?

The 2025 guidelines include more than 50 new or updated recommendations. Each is written to ensure that every adult with CHD gets the best care possible.

Below are some key takeaways. For details about those that are more specific to your heart defect, see the full guidelines or the Guidelines at a Glance.

What do the guidelines say about seeing an ACHD specialist?

ACHD specialists have special training in adult congenital heart disease. Most adults with CHD should be seen at least once by an ACHD specialist. Others should be followed by an ACHD specialist.

• Those who had surgery as a child and were told they were "fixed” should see an ACHD doctor at least once. This will help to confirm the heart repair is still working and your heart is doing okay. Those with a simple defect should also see an ACHD doctor at least once.
• Those with moderate or complex CHDs should be followed by an ACHD specialist.

People who get ACHD care often have better health and may live longer. But this care can be hard to access. Common barriers include distance, transportation, health insurance, childcare, and work schedules. There also are not enough ACHD specialists for everyone who needs one.

For those who have trouble getting to an ACHD specialist, the 2025 guidelines suggest a team approach. Your local heart doctor can manage your regular check-ups and day-to-day care. Your ACHD specialist takes care of more complex tests, procedures, and surgery. When these doctors talk to each other and work together, you get the best care possible.

If traveling to an ACHD center is hard, ask your local heart doctor about partnering with an ACHD clinic near you. For those who can travel, or if you are looking for care, the ACHD Clinic Directory can help you find an ACHD clinic near you.

How do ACHD doctors classify risk?

No two hearts are the same. Two people can have the same heart defect but still have very different health needs. Your level of care may change over time as your health changes.

The 2025 guidelines help ACHD doctors decide the level of care each person needs. The guidelines classify the risk to your overall health by looking at the way your heart is built and the types of symptoms you have. This classification system helps doctors:

• Understand how serious your condition is.
• Decide how often you should have check-ups.
• Choose the right tests for you.
• Predict possible problems, like hospital stays.
• Know when and where you need special care.

Using this system helps all heart doctors take better care of adults with CHD. It also helps you and your loved ones understand why certain care, tests, or specialists are recommended.

What do the guidelines say about mental health and ACHD?

Mental health matters as much as heart health. Your ACHD doctor should include screening for depression, anxiety, PTSD, and memory or thinking problems as part of your exam. If needed, they should refer you to a mental health specialist.

What do the guidelines say about exercise and physical activity and ACHD?

The new guidelines encourage staying active when it is safe for you. Exercise is good for your heart and overall health.

Before starting an exercise program, talk to your ACHD doctor. Ask for a personalized exercise prescription. Having a plan will help you to strengthen your heart, maintain a healthy weight, and lower future heart risks.

What do the guidelines say about family planning and ACHD?

Ask your ACHD team which birth control is safe and effective for you.

Most women with ACHD can have a safe pregnancy and vaginal delivery if they know the risks and are monitored. A C-section is not necessary unless there is a medical reason for it.

It is important to talk with your ACHD team before getting pregnant. They will discuss your risks and:

• whether you need treatment first for your heart before getting pregnant.
• what to expect during and after delivery.
• whether there are any risks of CHD to your baby.

Genetic counseling is also advised for men and women with CHD — especially if CHD runs in the family.

If you are looking into fertility treatment, include your ACHD doctor in those talks, too.

What do the guidelines say I should tell my ACHD team if I need a procedure or surgery?

Tell your ACHD team if you are planning to have a cardiac or non-cardiac surgery or a procedure. This is especially important if you have a moderate or complex heart defect.

Your ACHD doctor can coordinate the care team and give expert advice about:

• Risks
• Anesthesia
• Care after surgery
• The safest hospital for you

What do the ACHD guidelines say about endocarditis?

Endocarditis is a serious infection of the inner lining of the heart and can spread to heart valves and surrounding tissues. Report any fever, unusual fatigue, or new symptoms promptly. If you have had a pulmonary valve replacement that is not working well, your doctor should check for this serious heart infection.

What do the ACHD guidelines say about arrhythmias?

Arrhythmias, or heart rhythm problems, are when your heart beats too fast, too slow, or at an unsteady pace. For adults with complex congenital heart defects who have an irregular atrial rhythm, restoring normal rhythm is preferred over slowing the heart down.

What do the ACHD guidelines say about heart failure?

Heart failure is when the heart cannot pump blood well enough to meet the needs of your body. There are many new heart failure treatments available for adults with CHD. Ask your ACHD team if any of these options might be right for you.

What do the ACHD guidelines say about transitioning to adult CHD care?

The transition from pediatric to adult congenital heart care is a critical and sometimes overlooked step. It happens at different ages and in different ways for each young person. Parents and caregivers should help teens transition. Doing so gives young adults the necessary tools to understand the need for and to maintain quality lifelong CHD care. When young adults don’t transition, it can lead to gaps in care. As some teens transition out of pediatric care, they may have difficulty finding an ACHD program. The ACHD Clinic Directory can help them find specialized care for their CHD throughout adulthood.