Primary Children's Hospital - Salt Lake City

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Adult Congenital Heart Disease Program

at Primary Children's Hospital

Call (801) 213-3599
Thankfully, most children born with congenital heart conditions will reach adulthood—which means that at some point a child will need to transition from pediatric to adult care. That’s why we’ve created our Adult Congenital Heart Disease (ACHD) Program. This program ensures that our young adult patients have the follow-up care they need in their adult lives.
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Our expertise

  • Connective Tissue Disorders

Connective tissue disorders are conditions that affect the body’s structural components. Patients with connective tissue disorders may be at risk of having heart and blood vessel complications. Our ACHD ream specializes in taking care of patients with these disorders and watching for the potential complications that can arise.

We work closely with our cardiac genetic providers to obtain genetic testing for you and your family when required. We see patients of all ages and can arrange for all family members to be seen in the same day.

  • Heart Transplant

Patients with congenital heart conditions may eventually require a heart transplant. There are several reasons why this may be the best option for your condition. This process is very involved and does carry significant risk, so our team would ensure all other options are explored prior to pursuing a transplant.

  • Genetic Syndromes

Most congenital heart conditions are from an unknown cause. However, some patients with a heart condition may have an underlying genetic syndrome. We we work closely with our cardiac genetics departments at Primary Children's Hospital, the University of Utah Hospital, and the Intermountain Medical Center to treat genetic conditions. Genetic counseling may be appropriate for men and women with congenital heart conditions.

  • Pregnancy

If you’re a woman with a congenital heart condition, we strongly encourage you to establish a primary OB/GYN provider and meet with a maternal-fetal medicine provider (high-risk OB/GYN) before considering pregnancy. You can also talk to certified genetic counselors and physicians with genetic specialization.

Your primary OB/GYN can discuss birth control and sexual function, including any side effects of medications, with you. If you do decide to become pregnant, your maternal-fetal medicine provider will work closely with your cardiologist before, during, and after pregnancy.

All ACHD providers have consulting privileges in the obstetrical units at the University of Utah and Intermountain Medical Center. We offer transfer if you need additional services or ongoing required care during your pregnancy or delivery. 

  • Psychosocial Support

Being a cardiac patient can be hard psychologically and socially. That’s why we help connect our adult cardiac patients with mental health services if the need it. First, we use our social work team to provide an initial psychosocial and mental health assessment. Then the social worker will refer you for services based on need, location, and insurance coverage.

  • Pulmonary Hypertension

Our team works very closely with pulmonary hypertension (patients with high lung blood pressure) specialists through the pediatric and adult hospitals in Salt Lake City. A pulmonary hypertension specialist and your adult congenital cardiologist will help you manage your condition.

Our campus

Visiting and staying at Primary Children's Hospital

Whether you're visiting a patient, have a child being admitted overnight, or are staying with us for a longer period, we are committed to making the experience the best it can be.

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What to expect

We work closely with your pediatric cardiologist to make sure you can safely transition from their care to the adult world of cardiology. During the initial clinic visit, we’ll go over your history and schedule any tests your doctors need. Once your testing is complete, you will meet with the ACHD team to discuss your history, review your test results, and make a plan for your future heart care.

Electrocardiogram (ECG

For an ECG test, stickers with small wires attached are placed on your chest to look at the electrical rhythm of your heart at that one point in time. It does not hurt, and the most uncomfortable part of the test is removing the stickers.

Echocardiogram (Echo)

Echocardiograms use ultrasound to take pictures of your heart and the blood vessels. They’re usually performed painlessly from the outside of the chest but in rare cases can also be done through the esophagus. (If a transesophageal echo is needed, you would be put under general anesthesia.)

Chest X-ray

A chest X-ray takes a picture of your chest and heart to provide detail on the size of your heart, whether or not there is fluid, or if there is an infection in the lungs.

Magnetic Resonance Imaging (MRI)

An MRI gives clear, three-dimensional pictures of the heart and blood vessels. A special dye is used to improve the pictures obtained during the 45 to 60 minute test. The machine can be loud, so special headphones are provided.

Computerized Tomography (CT)

A CT scan is recommended if you cannot have an MRI or images of the smaller blood vessels in the heart or chest are needed. A special dye is used to improve the pictures. Radiation is used too, so the test is used sparingly.

Cardiac Event Monitor

Heart rate monitors observe your heart rhythm for longer periods of time. There are different types of monitors that can last for 24 hours, 48 hours, two weeks, or up to 30 days.

Exercise Stress Test

For an exercise stress test, you run on a treadmill or ride a stationary bicycle. A mouth piece attached to a machine will monitor how your body tolerates exercise and uses oxygen. These stress tests are used to see if it is safe for you to exercise, to determine how a woman may tolerate pregnancy (a 9 month stress test), or to monitor any changes in your heart condition.