​Care Considerations Across the Lifespan for Children, Youth and Adults with Heart Conditions

​Why Specialized Lifelong Care is So Important

CHD is a lifelong condition that requires specialized care. Congenital cardiology care is important to address nutritional needs, exercise, intellectual disabilities and many cardiac-specific risk factors. Physicians that specialize in CHD have advanced training in this area and are better able to recognize health issues associated with the CHD. 

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.

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.