--- title: Adults Living with Congenital Heart Disease description: Many people with CHD do well as they move into college, work, and adult life, especially when they have strong support. Every person’s situation is different. It can help to know about common challenges, so you can plan ahead and… url: "https://cardiacneuro.org/library/adults-living-with-congenital-heart-disease/" updated: "2026-09-14" category: Age and Stage Based Resources tags: - CHD --- # Adults Living with Congenital Heart Disease Many people with CHD do well as they move into college, work, and adult life, especially when they have strong support. Every person’s situation is different. It can help to know about common challenges, so you can plan ahead and get support when you need it. ![](https://cardiacneuro.org/wp-content/uploads/2026/09/Adult-webpage-layout-FINAL-FINAL.-DO-NOT-EDIT.-7.9.2026-1024x510.png) ## Common Challenges Some adults with CHD may experience: ### Mental Health Concerns Adults with CHD can have higher rates of: - Depressive symptoms (feeling down, sad, or losing interest in things) - Anxiety (feeling worried, nervous, or on edge) - Post Traumatic Stress Disorder (PTSD) (stress symptoms that can happen after scary or upsetting medical events) These feelings are common and treatable, but they may not always be recognized. It is normal to feel: - anxious about your heart condition - sad about limits on activities - stressed about medical procedures These feelings are not weakness. They are a normal response to living with a long-term heart condition. Support is available. ### Challenges with Independence Living on your own as an adult with CHD can look very different from person to person. Some people may need full supportive care. Others may be able to live independently, work full time, attend college, or start a family. And many people are somewhere in between. Your needs may change over time depending on your health, procedures, or hospitalizations. It can help to check in often with your family or caregivers and your medical team. There may be programs and services that they can help connect you with based on your specific needs. These may be community programs, online support groups, or hospital-based services. The goal is to support your health and daily life in a way that helps you have the best quality of life. ### Neuropsychological Challenges Most of what experts know about neuropsychological challenges in adults with CHD comes from children with CHD. It is likely that challenges from childhood will continue as an adult, but they may look different in adult life. Challenges in executive function can make it difficult to manage your healthcare needs and navigate a complex medical system. **Executive functioning** involves skills related to planning, organizing, and being able to change plans when needed. Social challenges can make friendship and dating hard. Some people with CHD may have difficulty understanding complex social situations and pragmatic language. *Pragmatic language* means using language in social ways, like understanding sarcasm or other people’s points of view. ### Transition to Adult CHD Care The move from pediatric care to adult CHD care often starts in the teen years. But no matter when it happens, it is important to learn how to navigate the adult healthcare system. [The Adult Congenital Heart Association](https://www.achaheart.org) is a great resource for this. **It is very important to keep seeing your Cardiologist as an adult.** Even if you feel fine, routine follow-up visits help: - Monitor your heart condition - Plan care early if changes happen ![](https://cardiacneuro.org/wp-content/uploads/2026/09/Adult-webpage-layout-FINAL-FINAL.-DO-NOT-EDIT.-7.9.2026-2.png) Once you turn 18, you are fully in charge of decisions about your medical care and treatment. If you want a parent, partner, or another trusted person to help with your care, you may need to sign forms that give permission for them to be involved. These forms may need to be signed with each provider you see. Some adults with congenital heart disease (CHD) want a parent to keep coming to clinic visits. This is a personal choice, and it may help to talk about it together before deciding. Support can look different for different people, such as: - Independent: you go to the visit without another person - Minimal support: you go into the visit alone while your parent or partner waits in the waiting room or is available by phone if needed - this may feel helpful for the first few visits - More support: your parent or partner comes into the visit with you - they may help take notes - they may help answer questions about childhood medical history The goal is for you to feel as independent and confident as possible while still getting the support you need. ### Health Insurance Health insurance can be harder to get as an adult, especially after you are no longer covered through your parents or school. While rules vary by state, many people can stay on a parents insurance plan until age 26. The Adult Congenital Heart Association has a lot of information related to insurance you can find [here](https://www.achaheart.org/your-heart/resources/insurance-affordable-care-act/). ### Employment Challenges Adults with CHD may face unique challenges in the workplace due to their medical needs such as: - Time off for medical appointments or procedures - Activity restrictions - Workplace accommodations (changes or supports at work that help a person do their job well and safely) Some heart conditions may qualify for protections under the Americans with Disabilities Act (ADA). This may apply if your heart condition significantly limits major daily activities. [The Job Accommodation Network](https://askjan.org) provides free guidance. More information about CHD and careers can be found [here.](https://www.canva.com/design/DAG-4wUxFZg/D3G0BL1eMgf8uYXdA34-zA/edit) ### Family Planning Considerations People with CHD can often have healthy pregnancies. But risks can be very different depending on your specific heart condition. If you are thinking about pregnancy, talk with your heart care team early so you can: - Understand your personal risks - Make a safe plan for care ## Tips for Success ![](https://cardiacneuro.org/wp-content/uploads/2026/09/Adult-webpage-layout-FINAL-FINAL.-DO-NOT-EDIT.-7.9.2026-1.png) ### Medical Supports Look for providers who understand brain health and development in adults with CHD, such as: - a Primary Care Physician (PCP) with experience supporting neurodivergent adults - an Adult Congenital Heart Disease (ACHD) cardiologist - a neuropsychologist - an occupational therapist (OT) who specializes in neurodivergent adults It can also help to find an ACHD-accredited care center. You can find accredited centers[here.](https://www.achaheart.org/your-heart/resources/clinic-directory/) ### Educational Supports If you are in college or training programs, it may help to plan ahead and ask for support early. Helpful steps may include: - getting class and living disability accommodations before arriving on campus - finding student organizations that support disabled students - looking for life skills resources - finding career development resources that match your needs and any limits ### Community Supports Many adults do better when they feel supported and connected. You may be able to find support through: - Online peer groups for adults with ACHD or disabled adults - Local or national organizations: - [Cardiac Neurodevelopmental Outcome Collaborative (CNOC)](https://cardiacneuro.org/membership-u/) - [Adult Congenital Heart to Heart program](https://www.achaheart.org/your-heart/programs/heart-to-heart/) - [SV-One](https://www.svone.org) – single ventricle specific - [Young Mended Hearts](https://mendedhearts.org/about-young-mended-hearts/) - [Conquering CHD](https://www.conqueringchd.org/learn/adults/) ![](https://cardiacneuro.org/wp-content/uploads/2026/09/Adult-webpage-layout-FINAL-FINAL.-DO-NOT-EDIT.-7.9.2026-3.png) ### Personal Supports Small daily supports can make a big difference. Consider: - using campus or community classes (like music or yoga) - joining shared-interest groups (like sports groups or book clubs) - working on healthy routines for: - studying/working - eating - sleeping - staying active ### If you have concerns at any time, it is ok to ask questions and seek support. You know your child best, and your care team is there to help. ## Resources #### Adult Congenital Heart Association - [Neurocognitive Issues in CHD](https://www.achaheart.org/your-heart/educational-qas/living-with-chd/neurocognitive-issues-in-congenital-heart-disease/) - [Social Security Disability Information](https://www.achaheart.org/your-heart/resources/social-security-disability/) - [Mental Health Resources](http://achaheart.org/your-heart/resources/) - [Pregnancy and CHD](http://achaheart.org/your-heart/educational-qas/living-with-chd/pregnancy-and-chd/) - [Preparing for College](https://www.achaheart.org/your-heart/educational-qas/living-with-chd/preparing-for-college-when-you-have-congenital-heart-disease/) #### General Resources - [Navigating CHD as an Adult](https://clicktime.symantec.com/15xVScmsm5jSQ33zQd8Jc?h=QibhnEtPdPxW8S7y9Kw1xrjXdbu1MVZEsrKopvI3KOI=&u=https://vitals.sutterhealth.org/navigating-congenital-heart-defects-as-an-adult/) - [Health Care Transition](https://autisticadvocacy.org/wp-content/uploads/2013/12/HealthCareTransition_ASAN_PolicyBrief_r2.pdf) - [Conquering CHD Adult Congenital Heart Disease](https://www.conqueringchd.org/learn/adults/) #### Employment - [Job Accommodation Network](http://askjan.org/) #### Adults with Disabilities - [Center for Transition to Adult Health Care for Youth with Disabilities](https://movingtoadulthealthcare.org/) - [Exceptional Lives: Social Services for Adults with Disabilities](https://exceptionallives.org/guides/social-services-adults-disabilities/) - [Exceptional Lives: Transition to Adulthood for Patients With Intellectual Disabilities](https://exceptionallives.org/guides/planning-transition-adulthood-youth-disabilities/) - [The Arc of the United States: Disability Rights, Advocacy, & Inclusion](https://thearc.org/) - [Physical, Speech, Occupational Therapy for Adults with Disabilities](https://unifiedtherapy.com/physical-speech-and-occupational-therapy-for-adults-with-disabilities) #### Mental Health - [Conquering CHD: Mental Health Matters](http://conqueringchd.org/learn/mental-health-matters/) [Check out our Resource Center to learn more](https://cardiacneuro.org/for-patients-and-families/chd-resources/)