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What is congenital heart disease and why should you care?

Published Date
Author Simona Trakiyska

[5 MIN READ | 39 MIN WATCH]

In this article/video:

  • Congenital heart disease (CHD) is the most common birth defect, occurring in 1 in 100 live births, and can lead to lifelong problems.
  • Symptoms of CHD can often go undetected until health issues arise in adulthood.
  • The Providence Adult and Teen Congenital Heart Program (PATCH) in Spokane, WA is a nationally recognized comprehensive care program designed to treat adolescents and adults with CHD.

Heart disease is a universal phrase that refers to various forms of cardiovascular diseases and conditions, all of which can impact the function and structure of the heart. Health and lifestyle choices can affect your heart health and increase your risk of a heart attack or stroke, but some people are born with heart defects and have no choice in the matter. Congenital heart disease (CHD) can lead to serious health problems later in life.

What is CHD?

At its core, CHD is a birth defect that can affect how blog flows through the heart and throughout the rest of the body. CHD can range in complexity. Some simple defects are treated in childhood and may or may not impact a person’s adult life. More complex CHD often requires a lifetime of procedures, treatments and surgeries.   

For both children and adults with CHD, specialized and ongoing care is recommended to ensure appropriate and personalized treatment to prevent unexpected health complications and maximize quality of life.

CHD Symptoms

The symptoms of CHD are not always apparent. However, if any of these are present and a cause has not yet been identified, you may want to ask your doctor to evaluate you for CHD:

  • Irregular or rapid heartbeat
  • Difficulty breathing/ shortness of breath
  • Swollen feet/legs
  • Exhaustion or fatigue

Treatments for CHD

Treatments for CHD vary depending on the severity of the defect. When diagnosed early in life, surgeries to repair the heart and blood vessels are commonly performed.

For some patients, non-surgical treatments may be necessary. A procedure called cardiac catheterization uses a tube inserted into blood vessels feeding the heart to give doctors a visual of the problem and enable them to determine how best to repair the problem.

It is important to note that in patients with CHD there rarely is a “cure.” Surgical or non-surgical treatments can repair or palliate heart defects, but ongoing monitoring is required to ensure CHD patients lead healthy and productive lives.

For this heart health podcast, Dr. Jeremy Nicolarsen, a trained pediatric cardiologist and cardiovascular disease (adult cardiology) clinician at Providence and Melissa Faucher, a CHD patient, provide us with in-depth insights on what kind of care is needed for CHD patients. They recount the very personal journey of overcoming challenges, finding strength and putting faith in science and the healing process as a whole.

From Dr. Jeremy Nicolarsen and Melissa Faucher, we learn that whether diagnosed in infancy or in adulthood, patients with CHD have unique care needs. To better understand the scale and evolution of clinical treatments to help patients with CHD, it’s important to look at some data.

  • 1 in 100 children are born with heart defects
  • Thanks to advancements in congenital cardiology and surgery, now more than 90% of children born with a heart defect survive to adulthood, resulting in a growing population of adult congenital heart disease (ACHD) patients
  • There were more than 1.4 million adults living with CHD in the U.S. as of 2010 – that number may be closer to 2 million by now.

Providence and ACHD Care

Launched in 2016, The Providence Adult and Teen Congenital Heart Program (PATCH) was one of the first nationally accredited ACHD programs to be recognized as an Adult Congenital Heart Association (ACHA) ACHD Comprehensive Care Program. PATCH is located within the Providence Center for Congenital Heart Disease (PCCHD) in Spokane, Washington, a comprehensive, fetal to adult congenital cardiology program.

What is the PATCH Program?

PATCH serves as the primary center for complex ACHD care and congenital cardiac surgery for Providence and is the only ACHD program in the Inland Northwest, with several satellite clinics across the region. It aims to connect adolescents and adults living with CHD to specialized care, whether in Spokane, Clarkston, ID, Missoula, MT, or Richland, WA by one of its six ACHD providers, or via ePATCH, its telehealth enterprise.

This effort includes training for providers who may be interested in improving ACHD care across clinical specialties, as well as improving access to the right care for these patients. Providence seeks to extend the PATCH model to deliver specialized CHD care to patients across its seven-state healthcare system.

Important for patients to know

Specialized ACHD programs are very important for patients since childhood heart issues can return, progress, and even lead to the need for unique procedures and surgeries later in life. Individuals with CHD may feel healthy for many years as adolescents or young adults and later experience symptoms such as shortness of breath, fatigue, and dizziness which, in many instances, go unrecognized or ‘unassociated’ with the CHD.

Unfortunately, patients who have battled CHD in childhood may have a false sense that they are “cured.” We recommend that patients with CHD remain aware of signs and symptoms expected with their condition(s) and remain in regular cardiac care, preferably with a specialist in CHD if the underlying heart defect is complex. Many times, arrhythmias, stroke, heart failure, pulmonary hypertension, and heart valve problems can be managed more effectively or even prevented with ongoing specialized ACHD care.

Thanks to the advancements in diagnosis, surgical techniques, and long-term care, more patients with CHD are surviving into adulthood and maintaining reasonable quality of life. At the Sacred Heart Medical Center in Spokane, WA, trained ACHD specialists work closely with psychiatry/psychology to offer educational seminars that provide holistic support and a greater understanding of how patients can care for their heart disease.

Getting ACHD patients to receive specialized cardiac care can help ensure their well-being and establish ongoing medical care for life. Providence is expanding its focus and efforts to raise awareness of the importance of programs such as PATCH. It is also encouraging providers across specialties to learn about and invest in programs to help patients manage CHD across all stages of life.

Learn more:

  • If you have been diagnosed with CHD or have concerns about your heart health or overall well-being, talk to your doctor.
  • Living with CHD? Check out some healthy living tips from the Adult Congenital Heart Association (ACHA).
  • For more information, or to seek out care from PATCH, visit the ACHA Clinic Directory.
  • For general information about the PATCH program or to discuss a referral to specialized ACHD care, call 509-474-6707.
  • Learn more about the data around CHD from the CDC