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How Can Adults With Congenital Heart Disease Reduce Risks? Study Finds Lifetime Cardiology Monitoring Is Key

ROCHESTER, Minn. — Heart failure is a potentially urgent health concern for young adults with congenital heart disease (ACHD) that is often overlooked and undertreated, even as hospitalizations for this condition continue to rise. New research from Mayo Clinic shows that young adults in the U.S. Living with congenital heart disease are at an increased risk of death or cardiovascular complications after being hospitalized for heart failure. However, study data published in the Journal of the American Heart Association also found that patients who had been receiving recent cardiology care before a heart failure hospitalization were less likely to die.

"More than 85% of children born with congenital heart disease reach adulthood. They are likely to experience complications later, yet 61% of these patients beyond the age of 18 do not see a cardiology specialist," says Luke Burchill, M.B.B.S., Ph.D., a cardiologist at Mayo Clinic and first author of the study. "These young adult patients have a strong need for individualized care pathways to improve their quality of life and monitor health issues like heart failure."

Prior research showed that heart failure hospitalizations of U.S. Adults with congenital heart disease increased dramatically from 1998 to 2011. To further understand this trend and its effect on patients and hospital resources, Dr. Burchill and colleagues used national data to study a retrospective cohort of adults with congenital heart disease hospitalized in the past decade. The percentage of ACHD heart failure hospitalizations increased significantly, rising from 6.6% in 2010 to 14% in 2020.

In more than 26,000 unique hospital admissions of ACHD patients, 22% had heart failure and 78% did not. Those admitted with heart failure had a higher risk of death and other major heart and brain complications and used more healthcare resources, including rehospitalization and post-acute care services than those admitted without heart failure. However, people who had a cardiology clinic visit within 30 days prior to hospital admission had lower rates of death due to any causes at the 90-day and 1-year mark.

The ACHD patients with heart failure were nearly twice as likely as those without heart failure to be readmitted to a hospital, especially those under age 45, regardless of their type of congenital heart disease. Younger patients also required more medical or supportive care after they left the hospital before they could return home and care for themselves.

"Many of the patients I meet with ACHD and heart failure share a similar story of not having their heart-related symptoms taken seriously, leading to a delayed recognition and treatment of heart failure. The good news is that we can reset the course for most," says Dr. Burchill. "We have new medications to restrengthen the heart, new options for replacing heart valves without opening the chest, and low-risk treatments for returning heart rhythm to normal. Our goal is to shift the focus from heart failure to heart function and patient success in feeling better and living longer."

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Down Syndrome And Congenital Heart Defects

When it comes to matters of the heart, some conditions involve things we can impact, but others we have no control over. About one in 100 babies born in this country have some sort of heart defect. The number is much, much higher for babies with Down Syndrome.

Since the day he was born, Devin Cannon has been a blessing, although his birth came with some unexpected surprises.

"When he was born in 1991, we were not aware that he would have Down syndrome," his mother Angie Cannon said. "When Devin was born, he did have five holes in his heart, and so it was a very scary time."

"When Devin was born, he did have five holes in his heart, and so it was a very scary time." Angie Cannon, mother

Babies with Down Syndrome have a much higher rate of heart defects, impacting between 40-60% of births.

It was a lot for the Cannon family. Devin will need heart monitoring for the rest of his life. His mother said he connected with heart specialists at Golisano Children's Hospital when he was 1 month old.

Nurse practitioner Shantelle Barta is part of his care team at the hospital's congenital heart program. "He has a small hole and between the bottom chambers of his heart, so that's what we call the VSD," Barta said. "His is kind of on top, near his heart valves, and so we follow it to make sure that there's no leaking of the valves or that there's no obstruction."

Angie and Devin Cannon, CREDIT: WINK News

As Devin grew, four of the holes in his heart closed. They have continued to keep watch on the last one going on 32 years.

It's not uncommon for patients to stay with a pediatric heart program that specializes in birth defects.

"We continue to follow even adults that were born with heart defects," Barta told WINK News health and medical reporter Amy Oshier, "so about one in 100 babies is born with some kind of heart defect. It can be something very mild to something that's very complex."

Devin has grown and thrived in the three decades he's been under Golisano's care. He loves Spiderman and playing sports.

His mother said he inspires her with his huge heart. "He enjoys every minute he spends he wakes up singing and dancing, and he loves his life."

Nowadays, most congenital heart defects are picked up at birth. That wasn't the case many years ago. Thanks to comprehensive screening and treatments, patients are living longer, healthier lives.

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