How Children’s Adult Congenital Heart Disease Program Supports Adults and Adolescents with CHD

A congenital heart defect (CHD) is a problem with the structure of the heart that exists at birth, whether discovered at the time of birth or later in life. While a CHD is a serious medical condition, thanks to the advancements in treatment and medical care, people with a CHD are living longer and healthier lives. Patients can be seen through adulthood with the Children’s Nebraska Adult Congenital Heart Disease (ACHD) program.

Our Adult Congenital Heart Disease (ACHD) program, in partnership with Nebraska Medicine, is the only program in the region and was one of the first in the nation to receive accreditation from the Adult Congenital Heart Association.

Children’s ACHD program is accredited by the Adult Congenital Heart Association and was one of the first in the nation to receive this accreditation.

If you’re an adult or adolescent living with CHD, ongoing medical care is crucial. From routine monitoring to special health considerations to surgery, CHD requires you to be on top of your health in several ways. At Children’s, our highly specialized cardiac care team is here to support you from childhood through adulthood.

Routine Monitoring of Congenital Heart Disease in Adults

Adults and adolescents with CHD may have concerns they didn’t have in childhood, such as how to exercise, have a safe pregnancy or manage other health conditions alongside their heart defect. As a result, your provider will want to maintain occasional check-ups to monitor your condition.

At Children’s, we use advanced imaging techniques to monitor your CHD into adulthood, including:

  • Echocardiogram, or ultrasound of the heart
  • Electrocardiogram, to test the heart’s electrical activity
  • Cardiac MRI and CT scans to produce detailed images of the heart
  • Cardiac exercise or stress test to see how the heart works during physical activity
  • Cardiac catheterization, where a small, thin and flexible tube is inserted to evaluate the heart’s function

You may have new questions about your condition as you move through various stages of life, such as how to live safely, how much you should exercise, what kind of medications are safe or what other health conditions could affect your CHD. Our specialists are here to support you through it all.

Surgery and Other Procedures

If you require surgery or another procedure for your CHD, Children’s ACHD program offers the most up-to-date techniques and expert ACHD-trained health care providers to get you the best care possible.

Implantable Heart Devices

To maintain your heart rate or manage an irregular heartbeat, an implantable heart device might be recommended. These devices include pacemakers and implantable cardioverter-defibrillators (ICDs).

Interventional Catheterization

Certain cases of CHD can be repaired using catheterization — a procedure that uses a catheter (a thin, flexible tube). This catheter is inserted through a blood vessel (often in the groin) and directed toward the heart. Then, the catheter guides small tools to repair the heart defect or rhythm.


Complex CHD cases may require either minimally-invasive heart surgery or open-heart surgery. For instance, surgery can be used to replace one or multiple heart valves.

High-Risk Pregnancy Care for Mothers with CHD

While most women with CHD have successful pregnancies, extra precautions are taken to monitor you and your baby.

Your heart works harder during pregnancy, increasing the risk of complications. Seeing experts in both high-risk pregnancy and cardiology can increase your chances for a safe delivery and healthy baby.

With the ACHD program at Children’s, parents-to-be can expect coordinated care between our Adult Congenital Heart Association (ACHA) accredited cardiologists and their obstetrician.

Our cardiologists will conduct routine monitoring for the health of both mothers and babies. Each case of CHD is different. There may be instances where pregnancy is not recommended. Your ACHD specialist will keep you informed and guide you through your specific condition.

The Transition from Pediatrics to Adult Care for CHD

Medical conditions that require continuous care management can be overwhelming. However, it’s crucial to avoid care gaps by ensuring a seamless continuum of care in the transition from pediatrics to adult care for CHD patients.

As a child, your parent or guardian usually manages your health. As an adult, you’ll take charge of your medications, appointments, lifestyle choices and more. Our team will support and guide you so you are prepared to manage your own health care.

Expert Care for Adult Congenital Heart Disease

Your heart works hard for you, and if you have congenital heart disease, it needs some extra care and attention. At Children’s, our ACHD program provides the experts, tools, and resources you need to live a healthy life with CHD.

Are you an adult living with congenital heart disease? Contact Children’s ACHD program at 402-955-4350 to make an appointment with one of our ACHD-trained specialists. You do not need a referral to see one of our providers.


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