A congenital heart defect (CHD) is a problem with the structure of the heart that develops before birth and affects the way the heart works.
If you were born with a CHD, you are not alone! CHD is the most common birth defect, affecting 1 in 100 babies. Thanks to surgeries and treatments during childhood, more people with CHD are surviving and living into adulthood. In fact, there are now more adults than children living with CHD. You might be surprised to learn that being born with a CHD means you need specialized care for your entire life. Do not worry – we are here to help and explain.
Even if your heart problem was treated or “repaired” when you were young, you still need specialized care as an adult. Surgery is not a cure. As you get older, you may develop new heart problems. CHD is different from heart disease you can get later in life. Because of this, it is important to see doctors who are specifically trained to care for adults with CHD. They know more about the way your heart is built and how it works differently than people born without a CHD. They understand how your different heart affects other parts of your body.
Adult congenital heart disease (ACHD) specialized care means getting medical and surgical care from health care teams that are trained and educated in the care of this unique and complex group of heart issues. ACHD teams include cardiologists (heart doctors) who have special training to take care of people with ACHD. They will be very familiar with ACHD treatment guidelines, helping you get the best care for your situation. The 2018 AHA/ACC Guidelines for the Management of Adults With Congenital Heart Disease recommend that adults with CHD be followed by an ACHD board certified heart doctor. That means the doctor is committed to high standards of care and lifelong learning.
ACHD doctors understand the unique needs of adults with CHD. They know what problems to look for and how to catch them early. Seeing an ACHD team regularly can:
- Help find problems early
- Give the right treatment quickly
- Prevent serious health issues
- Improve your quality of life
- Help you live longer
Studies show that people who get lifelong ACHD care have fewer health problems and better survival rates.
We know that moving from pediatric heart care to ACHD care at times can be tricky and scary. That is why it is important to begin planning for transitioning care during early adolescence and complete it by 21 years. This will help ensure that you thrive and survive into adulthood.
At the Adult Congenital Heart Association (ACHA), we recognized the need to help adults with CHD find specialized care. That’s why we created the ACHA ACHD Clinic Directory. This online tool helps adults with CHD and families find clinics that take care of adults with CHD. It is the only directory of its kind.
All the clinics in the directory have at least one board certified ACHD doctor. Some clinics also have ACHA ACHD Accreditation. This means they meet the highest standards of care for adults with CHD.
With the directory, you can:
- Find the 10 ACHD clinics closest to you
- Search for ACHA ACHD Accredited programs
This is a common issue, and ACHA is working hard to grow the number of ACHD providers across the country. For now, if you do not live near a clinic, it is still important to visit an ACHD program at least once in your life. If you cannot travel, you can ask for a telehealth visit (an online video appointment). Learn more about how to get telehealth.
After your telehealth visit, your local heart doctor can work together with the ACHD team to take care of you. They will share information and make sure you get the best care.
The bottom line: Lifelong care from an ACHD specialist will help you live longer, stay out of the hospital, and feel better! Even if you feel fine, seeing a specialist can prevent problems before they start. Getting care from the right team really makes a big difference.