Lifelong Care

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Lifelong Care for Children, Youth and Adults


​Children​, adolescents and adults with congenital heart defects (CHD) require lifelong congenital cardiology care. Due to impove pediatric medical care and the success of surgical repairs, 90% of infants diagnosed with a CHD are living to adulthood. While the longevity and quality of life for children and adults living with a CHD has improved, these individuals and their families face a lifelong risk of health problems, disability and early death. 

Stay Strong; Stay in Lifelong Congenital Cardiology Care

"Stay Strong. Stay in Care​​" is a campaign from the Congenital Heart Public Health Consortium (CHPHC) designed to encourage adolescents and young adults with a congenital heart defect (CHD) to stay strong by staying in care. A goal of the campaign is to help adolescents and young adults realize that they can accomplish great things despite their medical condition. However, it is important to stay strong and as healthy as possible in order to be able to achieve these goals; a congenital cardiologist plays a key role in helping individuals with CHDs stay strong and healthy.​

Why Specialized Lifelong Care is so Important 

CHD is a lifelong condition that requires specialized care. Annually, approximately 1 in 110 babies are born with a CHD. Following surgery, the oft-used words of "fixed" or "repaired" lead to the false assumption that surgery corrected the CHD. Children, youth and adults with a CHD are more likely to report worse health overall. Lifelong care is important to address nutritional needs, exercise, intellectual disabilities and many cardiac-specific risk factors. Experts advise that anyone with a CHD should see a physician with advanced training in CHD care at least once in their life. Physicians that specialize in CHD have advanced training in this area and are better able to recognize health issues associated with the CHD. Individuals with more complex CHDs should visit a CHD specialist every two years because CHD heart problems are different than other cardiology problems. 

Care Considerations Across the Lifespan

Little Hearts: Parents, family members and others who care for infants and young children with a CHD need to be aware of the systems and supports available to them. Resources are available to support families/caregivers in assuring comprehensive primary and cardiology care. Support systems may also be accessed to assist with making informed decisions about the educational and leisure/play based activities that may enhance quality of life.

Youth and Transitioning Hearts: Beginning to take responsibility for their own (heart) health and wellbeing is an important step for all children. Guidance is available to support children in taking the first steps in communicating with physicians and other care providers, to youth making their own appointments, to young adults owning their transition plan and identifying the providers in their adult care team. Experts have found that less than half of adolescents with CHD had parents who discussed their child's transition to adult care with providers, which could contribute to the large percentage of CHD patients who do not transfer to adult care.

Adult Hearts: Staying in both primary care and congenital cardiology care is critical for individuals living with a CHD. As people born with CHDs age, there are a variety of occurring issues that are not often well understood. Recognizing and being aware of these issues are crucial for healthy lifelong care for adults living with CHDs. While many people will feel well, their medical team needs to work with them to maintain health, monitor for secondary conditions (such as arrhythmias) that may develop over time, and plan future interventions such as valve replacements in conjunction with college and career ambitions and all stages of life. Although there may be episodes of intense health needs, individuals with CHD can expect, with proper care, to have a job and live a full, active life.

Resources and support are also available to guide your decisions as you think about your vocational/career path and family planning as well as overall lifestyle choices. 

Reproductive Health in Young Women with Congenital Heart Defects

Reproductive health considerations should start even before a young woman is ready to start a family. These topics should include contraception, the decision to carry a pregnancy, and the challenges of parenting with a CHD.

  • Birth Control for Young Women with a CHD

  • Preconception Counseling for Women with a CHD

  • Planning a Healthy Pregnancy with a CHD

  • Genetics and CHDs

  • Parenting with a CHD: Why Prioritizing Your Own Health Is Important

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