By: Jamie Jackson and Kelly Huhn
Because a congenital heart defect (CHD) requires lifelong medical management, the emotional experience of having a CHD can be taxing. Individuals with otherwise healthy hearts confront daily stressors, such as deadlines at work and busy family lives. Survivors of CHD often have an added layer of stress due to managing their heart condition (e.g., taking medication, going to the doctor, undergoing invasive procedures), facing changes in their health over time, and for some, experiencing difficulties with memory and other cognitive skills.
These additional stressors faced by many CHD survivors can contribute to the experience of depressive and anxiety symptoms, according to Jamie L. Jackson, Ph.D., assistant professor of pediatrics and psychology, The Research Institute at Nationwide Children's Hospital and The Ohio State University, and a licensed clinical psychologist.
A psychologist's point of view
Research on the prevalence of depression and anxiety among CHD survivors has been mixed, but regardless of the actual rates, there is undoubtedly a significant number of CHD survivors who are affected. The experience of physical limitations, such as shortness of breath, and having a device, such as an implantable cardioverter defibrillator (ICD), are a few factors that may contribute to symptoms of emotional distress, Jackson said.
The good news, according to Jackson, is that symptoms of depression and anxiety are very treatable with talk therapy and/or medication, such as antidepressants. Those who are concerned about their emotional health should talk to their medical team, especially their cardiologist. Because anxiety can present as cardiac symptoms (e.g., racing heart, chest pain, difficulty breathing), ruling out changes in health is the priority. Members of the medical team may have referral resources for mental health services, such as psychologists/licensed social workers, who provide talk therapy, and/or psychiatrists, who prescribe medication.
Seeking support from a mental health provider does not need to wait for symptoms of depression and anxiety. In fact, talk therapy can be very effective in teaching stress management tools to prevent significant emotional distress. Prevention is the best medicine, both for our heart and our minds, Jackson said.
A patient's perspective
Kelly Huhn, an adult CHD survivor with a repaired postsurgical atrioventricular septal defect, a mechanical mitral valve and a pacemaker for bradycardia, has experienced mental health symptoms because of her CHD and has learned that there are ways to cope with this distress.
When Huhn recognized that she was depressed, she talked to a doctor, who helped her to find medicine that worked for her depression and to seek counseling to process the trauma from living with a chronic medical condition.
Huhn has also learned that an anxiety attack can feel like a heart attack, so she has tried to learn which symptoms are related to depression and anxiety vs. those that are related to her CHD.
"It's hard not to worry that something is wrong when my heart is pounding," Huhn said. "I always wonder if the pounding heart is caused by thoughts that are racing in my head, causing me to have an emotional reaction, or whether it's a physiological reaction of my heart condition."
Huhn suggests that if you find yourself in this situation, try to slow down your breathing and focus on calming down. If this doesn't help then, at the very least, call your doctor. Going to the emergency room is always an option, too. It's always better to be safe than sorry, but knowing where to go for help is important, she said.
Huhn also offers the following strategies for keeping CHD anxiety under control:
- Focus on not comparing yourself to other people or yourself.
- Recognize that one bad day does not cancel out all the good days nor does one good day cancel out all the bad days.
- Understand how a healthy heart functions.
- Become educated about your specific heart defect and how your heart functions. A lot of adults with CHD don't know what their condition is and which heart valve is affected. This uncertainty can cause anxiety.
- Stay in medical care.
- Advocate for yourself and make sure you have your parents with you at appointments. A doctor who knows you well enough can advocate for you, too.
Huhn tries to recognize her personal physical limitations, which can change daily, and gives herself grace to plan rest time.
Sharing stories with others in the same situation can help, too, which Huhn discovered when she started a support group for teens and young adults with CHDs. Huhn suffered from short-term memory loss but came to realize that this was common among her support group members. In fact, she learned that 12 of the 20 group members also had short-term memory problems.
Huhn also finds it helpful to seek out hobbies she enjoys. She recently joined a trivia team, which gives her one night off a week to have fun and be just Kelly rather than a wife, mom, pet owner, housekeeper and patient.
Mental health resources for pediatricians
- Policy | Mental Health Competencies for Pediatric Practice
- Clinical Report | Achieving the Pediatric Mental Health Competencies
- Patient Care | Mental Health Initiatives
- Toolkit | Addressing Mental Health Concerns in Pediatrics: A Practical Resource Toolkit for Clinicians (login required)
Mental health resources for families
- How to Talk About Mental Health With Your Child and Their Pediatrician
- Emotional Wellness collection of articles on HealthyChildren.org
- Congenital heart defects: resources to help your child thrive from birth to adulthood
Consider connecting patients and families with peer supports available through the following organizations:
The CHD According to Me series is an output of the Congenital Health Public Health Consortium (CHPHC); it was supported by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (HHS). The contents of the fact sheet are solely the responsibility of the CHPHC and do not necessarily represent the official views of, nor an endorsement by the member organizations of the CHPHC, CDC/HHS, or the U.S. Government.
American Academy of Pediatrics