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Adult Congenital Heart Disease Program (ACHD)

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People born with heart defects need individualized care from diagnosis through adulthood. The Adult Congenital Heart Disease (ACHD) Program shared by Seattle Children’s and the University of Washington (UW) 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.

What services do you offer?

The ACHD program offers a full range of services to diagnose and treat heart defects, both simple and complex, in adolescents and young adults up to age 21 as they get ready to transition to adult care.

Our services include:

Transition for Adolescents and Young Adults

For adolescents and young adults with congenital defects, this time of their life can bring new challenges. Often, it’s a time with more activity and decisions to make on their own. Both you and your adolescent may have questions about what this means for their heart. We provide answers and start preparing patients with congenital defects to move from pediatric to adult care.

A member of our team meets with your adolescent – usually at age 14 and again at age 18 – to talk with them about their unique needs. Our focus is to ensure that they understand as much as they can about their condition and treatment, something they might have relied on their parents for in the past.

We answer questions and provide advice about lifestyle 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

Our goal is to prepare and empower adolescents and young adults to take on a greater role in their own care and make their way through the adult healthcare system. We adapt our program to meet the needs of each patient, including patients who may get ongoing support from parents or caregivers.

During the transition years between 14 and 18, your teen continues to get their cardiac care at Children’s – either from their pediatric cardiologist or, if this better meets their needs, from a Children’s doctor who specializes in adult congenital heart disease.

Between the ages of 18 and 21, young adults transition to receiving care at the University of Washington Medical Center (UWMC). Patients and their families decide together with their cardiologist when it’s the right time to make this move.

Adult Congenital Heart Disease at UWMC

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

Like 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 happen in adulthood because of the defect or surgery to repair the defect. These may include heart valve problems, arrhythmia or heart failure.
  • Problems with other organs or systems, such as the liver or blood vessels in other parts of the body (like after a Fontan procedure)
  • Family planning, such as:
    • The risk of having a baby with congenital heart disease
    • Whether a woman with heart disease is healthy enough to carry a pregnancy
    • How to prevent or manage health problems that might arise during pregnancy
    • Adoption, if pregnancy is not an option
     

How to Make an Appointment

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.

  • For patients age 18 or younger, call the Heart Center at 206-987-2015.
  • For patients over age 18, call the ACHD program coordinator for UWMC at 206-598-1764. Read more about ACHD services at UWMC.

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

The ACHD Program shared by Children’s and UW is one of the largest programs of its kind in the nation. We are also one of the few hospitals in the country with a service to help teens transition to adult care.

Our doctors are on the leading edge of protecting the long-term health of people born with heart conditions. Several teach at the UW School of Medicine in the Division of Cardiology in both pediatrics and adult medicine.

Our doctors are experts on the latest in treating heart defects and related health issues at this important stage of life.

Dr. Karen Stout, a pioneer in ACHD care and director of the ACHD Program, sees patients at clinics in Bellingham, Everett and Wenatchee, as well as at Children’s main campus and UWMC.

Several of our doctors are involved in ACHD education, research and advocacy on a national level and speak about ACHD at national meetings. Dr. Stout is on the medical advisory board of the Adult Congenital Heart Association and ischair of its professional affairs group. 

Children’s has one of the few ACHD fellowships in the country to train cardiologists to meet the needs of adults born with heart disease. We also take part in multicenter research studies to better understand ACHD outcomes.

Who’s on the team?

Led by Dr. Stout, the program brings together a team at Children’s to help prepare adolescents and young adults to live a normal, productive life. The team includes:

  • Cardiologists
  • Cardiac surgeons
  • Interventional cardiologists
  • Electrophysiologists
  • Pediatricians
  • Internists
  • Radiologists
  • Vascular surgeons
  • Cardiac nurse practitioners
  • Social workers

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

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

Useful Links and Resources

Adolescent and Young Adult (AYA) Heart Center booklet

All files are PDFs.

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Read the Teenology 101 Blog

The Teenology 101 blog is a guide for parents and caregivers raising teenagers, written by experts from our department of adolescent medicine.