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 improved 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. 

Why Specialized Lifelong Care is so Important 

Annually, approximately 1 in 110 babies are born with a congenital heart defect (CHD). Following surgery, the oft-used words of “fixed” or “repaired” lead to the false assumptions. Children, youth and adults with 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. 

Care Considerations Across the Lifespan

​​Little Hearts: Parents, family members and others who care for infants and young children with a congenital heart defect 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. 

Transitioning hearts: Beginning to take responsibility for your own (heart) health and wellbeing is an important step for all children. Guidance is a​​​vailable to support children in taking the first steps in communicating with physicians and other care providers, to youth making your own appointment, to young adults owning their transition plan and identifying the providers in their adult care team.  

Youth and adult hearts: Staying in both primary care and congenital cardiology care is critical for youth and adults living with a CHD. As pe​​ople ​​born with congenital heart defects 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 CHD. While many people will feel well, your medical team needs to work with you to maintain your health, monitor for secondary conditions, such as arrhythmias, that may develop over time and plan future interventions such as valve replacements in conjunction with your ambitions for college and career and stage of life. 

  • Make sure to talk with your ACHD center about your emotional and social needs. They should offer mental health support and social services like insurance and employment resources. 
  • Get an exercise prescription from your ACHD cardiologist and update it regularly. It is important to live a heart-healthy lifestyle because you can still get other forms of heart disease.  
  • In fact, people with CHD are now living long enough to develop other new problems like the rest of the adult population such as high blood pressure. 
  • All women with CHD should check in with their ACHD center before becoming pregnant. With the right care, most women with complex CHD can have a baby. An ACHD center should review the risks of pregnancy to both mother and baby. Surrogacy is also an option for women with CHD. 
  • Certain forms of birth control can be risky for women with complex CHD; talk to your ACHD center to find a choice that is safe and effective for you. 
  • Adults with CHD should discuss end of life issues and share preferences with your healthcare team. 

Resources and supports 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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