People born with heart defects need lifetime mental health care, report says

People born with heart defects face a higher risk for anxiety and mood disorders as children and adults and should have mental health support built into their routine health care, according to a new report meant to spur research on the lifelong effects of living with such heart conditions.

The scientific statement from the American Heart Association – an analysis of the most current research – is "an urgent call to action" to integrate medical and psychological care for people born with heart defects and the first to summarize the psychological and social challenges they face. It was published Thursday in the AHA journal Circulation: Cardiovascular Quality and Outcomes.

People with congenital heart defects, or CHD, have hearts or blood vessels near the heart that did not develop normally before they were born. Though most people with such problems survive to adulthood, they may need multiple surgeries and specialty care throughout their lives. More than 2.4 million people in the U.S. are living with CHD.

"It's completely understandable to have a psychological reaction to living with a congenital heart defect," Adrienne H. Kovacs, chair of the group that wrote the statement, said in a news release. Kovacs is a clinical psychologist who specializes in working with people who have CHD. "The condition presents numerous challenges throughout the lifespan and may include unexpected news – such as a person realizing they can no longer physically manage the demands of their job, or learning that there are significant risks to pregnancy."

Many have tremendous resilience in the face of such challenges, she said, but "at the same time, we want to normalize psychological reactions and increase the prevalence of care for psychological well-being to help people with CHD experience a full and healthy life."

According to the statement, children with complex heart abnormalities are five times more likely to be diagnosed with an anxiety disorder during their lifetime. Yet only a small fraction of children with CHD are assessed or treated for mental health issues. About half of adults living with CHD are diagnosed with mood or anxiety disorders.

The statement highlights issues related to each life stage. During infancy, babies may experience painful or frightening medical procedures and be separated from caregivers for extended periods. This can make them hypersensitive to light and sound, cause problems with eating or sleeping or lead to developmental delays.

Additional hospitalizations and surgeries and the added responsibility of having to manage their health during childhood and adolescence can mean less time to play or attend school. This can lead to social withdrawal, anxiety, depression, anger and defiance. As adolescents, they also may stop following health recommendations or display risky behaviors.

Adults may experience new or worsening heart symptoms, repeat surgeries or other heart problems during adulthood, which can cause financial difficulties or issues with insurance and family planning. This can lead to relationship problems, education or employment issues and worries about maintaining good health and the possibility of dying.

"Decades of research describes the psychological and social stressors and challenges that can present across the lifespan for people with CHD," Kovacs said. "It's long overdue that we move beyond awareness to action and providing more resources and expert mental health care for people living with CHD."

The statement suggests integrating mental health specialists with CHD specialty care teams; encouraging self-care strategies such as relaxation techniques; and prescribing heart-safe medication therapy for anxiety and depression when appropriate.

"We would like mental health assessment and support to be part of comprehensive care for all people with CHD rather than a special service that is offered only in some places or special circumstances," Kovacs said.

Two other recent AHA scientific statements addressed issues related to CHD. A March 2022 statement recommended support for children during the transition from pediatric to adult health care, and an April 2022 statement summarized the ways in which social determinants of health impact CHD over the course of a person's life. A 2011 statement addressed developmental delays and neurodevelopmental outcomes in children with CHD.

American Heart Association News' mental health coverage is supported by Diane and Daniel Shimer. AHA News is solely responsible for all content and editorial decisions.

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