Treatments and Services

Adult Congenital Heart Disease Program (ACHD)

ACHD Triptych

What is the ACHD Program?​

People born with heart defects need lifelong care from diagnosis through adulthood. The Adult Congenital Heart Disease (ACHD) Program can help meet your child’s long-term healthcare needs — whether your child is new to our Heart Center or has been coming here for years. This program is shared by Seattle Children’s and University of Washington Medical Center (UWMC).

The ACHD Program offers a full range of services to diagnose and treat heart defects in adolescents and young adults up to age 21 as they get ready to transition to adult care. We focus on giving your child the tools to succeed in the decades to come.

Our program is accredited by the Adult Congenital Heart Association, the only group in the country just for adults with congenital heart disease.

What’s special about the experience at Seattle Children’s?

  • Expertise in ACHD and transition
    • The ACHD Program shared by Seattle Children’s and UWMC is among the largest programs of its kind in the nation. We are among only a few hospitals in the country with a service to help adolescents with congenital heart disease transition to adult care.
    • Our doctors are on the leading edge of improving the long-term health of people born with heart defects. All teach at the UW School of Medicine in the Division of Cardiology in both pediatrics and adult medicine.
    • Each of our doctors has training and experience in the latest ways to treat heart defects and related health issues at this important stage of life. They are all board certified in adult congenital heart disease.
    • Drs. Eric Krieger and Karen Stout, who co-direct the ACHD Program, are national and international leaders in ACHD care.
  • Advancing care for everyone with ACHD
    • Several of our doctors are involved in ACHD education, research and advocacy on a national level and speak about ACHD at national meetings.
    • Karen Stout is on the medical advisory board of the Adult Congenital Heart Association and chaired the writing committee that updated ACHD care guidelines for the American College of Cardiology and American Heart Association.
    • Seattle Children’s and UWMC have a fellowship in ACHD to train cardiologists to meet the needs of adults born with heart disease. Very few institutions are able to offer this kind of training.
    • We take part in multicenter research studies to better understand ACHD outcomes. For example, we study ways to manage health problems that may arise later in life in people with ACHD to learn more about what works best. We also check the results of our program to ensure our approach helps patients make the transition to adult care.

What services do you offer?

We provide care for patients with a range of heart defects, from simple to complex. Our services include:

Transition for Adolescents and Young Adults

Adolescence and young adulthood can bring new challenges for people with heart defects. Often, this is a time in life when they start making more decisions on their own. Both you and your child may have questions about what this means for their heart. We provide answers and start preparing them to move from pediatric to adult care.

A member of our team meets with your adolescent — usually at ages 14, 16 and 18 — to talk about their needs. We focus on making sure they understand as much as they can about their condition and treatment, something they might have relied on their parents or caregivers for in the past. We are here to empower them to take on a greater role in their own care as they enter the adult healthcare system. 

We answer questions and offer advice about choices that might affect (or be affected by) their heart condition, including:

  • School and work
  • Exercise and diet
  • Alcohol, smoking and drugs
  • Travel
  • Birth control and family planning

Between the ages of 14 and 18, your teen gets their cardiac care at Seattle Children’s — either from their pediatric cardiologist or, if this better meets their needs, from a Seattle Children’s cardiologist who specializes in ACHD.

Between the ages of 18 and 21, young adults transition to receive care at UWMC. Patients, their families and their cardiologist decide together when it’s right to make this move.

We adapt our program to meet the needs of each patient, including:

  • Patients who may need ongoing support from parents or caregivers due to developmental delays or other reasons
  • Patients with complex medical needs who are receiving other care at Seattle Children’s

Adult Congenital Heart Disease at UWMC

Our team includes doctors and nurses who work at both Seattle Children’s Heart Center and UWMC. That way, patients who make the transition from Seattle Children’s to UWMC can see providers they already know.

Like Seattle Children’s, UWMC offers a full range of cardiac services. ACHD providers focus on special issues that people with congenital heart disease may face as they get older, including:

  • Heart problems that may arise in adulthood because of the heart defect or because of the prior surgical repair. These may include heart valve problems, arrhythmia or heart failure. This also includes managing risks for acquired heart disease, like blood pressure and cholesterol.
  • Problems with other organs or systems, such as the liver or blood vessels in other parts of the body, that may be affected by the heart defect or the prior surgical repair (like after a Fontan procedure).
  • Family planning, such as:
    • Whether someone with heart disease is healthy enough to carry a pregnancy
    • The risk of having a baby with a heart defect
    • How to prevent or manage heart problems that might arise during pregnancy

Scheduling an Appointment With the ACHD Program

If your child or adolescent is a Heart Center patient, their cardiologist will involve the ACHD transition team in their care and answer questions you have about the program.

If your child or adolescent is not yet a patient here, their cardiologist or primary care doctor can refer them, or you can call us directly about becoming a patient.

Learn about Heart Center resources for teens and young adults, such as useful links, videos and recommended reading for you and your family.

Who’s on the team?

The ACHD Program brings together a team at Seattle Children’s to help prepare adolescents and young adults to live a normal, productive life.

The ACHD clinic at UWMC has a similar team caring for adults with congenital heart disease. Some team members see patients both at Seattle Children's as adolescents and then at UWMC as adults.

When needed, the ACHD team works closely with other types of providers, such as genetic counselors, liver specialists or obstetricians skilled in high-risk pregnancies.

Contact Us

Contact the Heart Center at 206-987-2515 for a referral, a second opinion or more information.

Providers, see how to refer a patient. 

Telemedicine

You may be offered a telehealth (virtual) appointment. Learn more.

Paying for Care

Learn about paying for care at Seattle Children’s, including insurance coverage, billing and financial assistance.