Adult Congenital Heart Disease Program

Because of improved treatment for kids with congenital heart disease (CHD), the vast majority of babies born with even the most complex heart defects are surviving into adulthood. Advancements in diagnosis, surgery, interventional procedures and medication mean that more and more kids with heart defects are growing up to lead full, active lives as adults.

At Children's Hospital Colorado's Heart Institute, our experts understand the unique needs of these patients and provide comprehensive, compassionate care to help adolescents and adults with congenital heart disease thrive. While those born with congenital heart defects are living longer than ever, congenital heart disease does not have a cure. This means that children born with CHD become adults with congenital heart disease and often require continued monitoring, care and follow-up treatments throughout adolescence and adulthood.

Read about adult congenital heart disease (ACHD) or watch the video below to meet several of our patients and the experts who care for them.

Why choose the Adult Congenital Heart Disease Program at Children's Colorado?

Our Adult Congenital Heart Disease Program, also called the Colorado Adult and Teen Congenital Heart (CATCH) Program, offers a complete range of diagnostic and treatment services for patients with adult congenital heart disease, including minimally-invasive procedures. We care for patients with all forms of congenital heart problems – from simple to complex – and are dedicated to helping patients optimize their health.

One of the first in the nation to receive accreditation from the Adult Congenital Heart Association (ACHA), our program is among the best in the country and is the only accredited ACHD program in Colorado. Our multidisciplinary experts see more than 2,000 patients annually providing us with the experience and knowledge to provide optimal treatment. As part of an ACHD-accredited joint program with the University of Colorado Hospital, Children’s Colorado also helps treat and manage teens with ACHD who are in the process of transitioning into adult care.

Learn how we help with the transition to adult care.

Experts from two leading hospitals working together

Our Program is made up of a group of heart doctors specifically trained in adult congenital heart disease who care for patients at both Children's Colorado and the University of Colorado Hospital (UCHealth), both located on the Anschutz Medical Campus. Our team uses resources from both hospitals to provide exceptional care that neither facility could provide alone.

Our ACHD specialists and team members

Our multidisciplinary team is made up of specialists from numerous fields, including: ACHD specialists, congenital heart surgeons, heart imaging specialists, electrophysiologists, high-risk obstetricians, geneticists, psychologists, nurses and social workers. We work together to determine the best course of care for every patient with adult congenital heart disease.

Our dedication to quality, safety and transparency

We are committed to improving the quality of care for all patients with adult congenital heart disease, both within our program and across the nation.

At the Heart Institute at Children's Colorado, our outcomes are significantly better than the national average for congenital heart patients.

Treating heart problems in adults with CHD

Adults with congenital heart disease need continued monitoring throughout their lifetime. Many will need further surgical or medical interventions to feel their best. Treatment options in the Adult Congenital Heart Disease Program include:

• Less invasive treatment options, such as transcatheter pulmonary valve implantation
• Surgical repair/revision of structural defects in the heart
• Complex electrophysiology procedures, many unique to patients with ACHD
• Medications used to control symptoms and improve the heart's function
• Comprehensive cardiac testing and imaging, including fetal echocardiography for pregnant patients

Because our team is involved in research and trials of new minimally-invasive devices and procedures, our patients have access to the latest and best equipment and techniques available.

Specialized care for women with heart defects

We understand that having children is a big part of many women's lives. Our Program provides comprehensive care for women with adult congenital heart disease to ensure a safe pregnancy and delivery for both mom and baby.

We provide guidance and care for:

• Contraception and family planning
• Pre-conception testing to evaluate potential risks
• Screening for fetal congenital heart disease through the Colorado Fetal Care Center
• Monitoring and care throughout pregnancy
• Safe delivery

Our team of high-risk obstetricians, maternal fetal medicine experts, anesthesiologists and geneticists works together to develop a care plan for each woman so she can deliver safely. We also work closely with each woman to honor her preferences for giving birth.

Genetics and family planning for adults with congenital heart disease

The genetics of congenital heart disease are complex and variable, but our experts can help both women and men living with congenital heart disease manage genetic conditions, as well as plan for a family.

Genetic assessments can help determine whether congenital heart disease will occur again in other family members and evaluate the need for further family screening. Our Adult Congenital Heart Disease Program provides:

• Genetic counseling and education
• Diagnostic genetic testing
• Family history risk assessment
• Management of genetic conditions

Cardiac genetic conditions we treat

Through our Heart Institute, we provide specialized care for children with genetic forms of cardiovascular disease. Our ACHD Program works with these experts to continue care into adulthood for patients with conditions such as:

• Marfan syndrome
• Loeys-Dietz syndrome
• Ehlers-Danlos syndrome (vascular type)
• Noonan syndrome
• Williams syndrome
• DiGeorge syndrome (22q11.2 deletion and duplication syndromes)
• Heterotaxy syndrome

Learn about genetic syndromes linked to heart defects in children.

Locations for ACHD care

Depending on each individual's unique needs, you may visit Children's Colorado or University of Colorado Hospital for appointments, procedures or surgeries. Our team will guide you to ensure you know where to go for care and to ensure a smooth transition from a pediatric to an adult setting when the time is right.

Contact us

We are available to answer your questions and recommend next steps for cardiac care. In most cases, your doctor will need to send a referral before you can be seen through our Program. For questions and appointments, please contact us:

Phone: 720-777-2243 (720-777-ACHD)
Email: achd@childrenscolorado.org