Living Well with CHDs

The Boston Children’s Hospital Guide to Cardiac Neurodevelopment

People born with congenital heart defects (CHDs) are at risk of developmental challenges, but appropriate care can help them to live their best lives. This guide will help you to navigate the developmental journey of CHDs: to understand challenges, to find opportunities, and to meet needs. This is not a page about medical care. Instead, it is a page devoted to optimizing quality of life. We are here to help, and you are not alone.

CHDs and neurodevelopment are linked

Heart defects affect not just the heart, but also the brain. People with heart defects sometimes have developmental delays or disabilities, such as trouble thinking, learning, talking, moving, making friends, or eating.

We’ve created this guide for the whole CHD community, to help people understand the connection between the heart and the brain. With this shared understanding, we can work as a community to intervene early and effectively, and to achieve the best possible outcomes.

The Power of Intervention

Building resilient kids

The right treatment for the right person at the right time

Doctors can monitor a child’s developmental health, just as they monitor their heart health. If they detect early signs of problems, they can recommend treatments. When treatment is early and appropriate, children have the best possible outcomes.

Every child with a heart defect can live a good and meaningful life. Early detection, and timely, appropriate interventions give them the skills they need to build resilience, and to thrive despite any challenges.

Trusted Partners

Trailblazers in cardiac neurodevelopment

We are a robust and well-integrated specialty service within the Benderson Family Heart Center. Our team includes experts from psychology, neurology, education, cardiology, and genetics, and we serve young people from prenatal diagnosis until age 24.

Our CNP continues to perform groundbreaking research, and we are motivated to understand and improve the outcomes of young people with heart defects.

We look forward to sharing what we know, and to learning from the whole heart defect community.

Cardiac Neurodevelopment Follow-up Programs

Why choose a cardiac follow-up program?

Cardiac neurodevelopmental follow-up programs offer specialty care that is tailored to the needs of children with heart defects. Professionals within a program understand the medical profiles and developmental trajectories of young people with heart defects.

While every program is unique, most offer:

monitoring and assessment
treatment
consultation
referral to local resources

Developmental care is best when it is local, and new clinics are opened every year. We encourage you to find your program.

Navigating This Guide

Using this website for answers and support

We have created this guide to accompany you on your journey with heart defects. At every stage of your journey, you can return here for strategies and resources to support healthy development. We will be with you every step of the way.

If you are new here, we invite you to explore our family guides, which are organized by age. You can also find interventions, search by topic, or connect with community resources.

We are glad you are here, and hope to see you back often.

Heart Stories

Introducing Wesley

Beating the odds: medical and developmental

Wesley is a happy, active fourth grader who loves riding his bike, building with LEGOs, and playing with his puppy. However, his path to get to this healthy place was not easy.

Since his birth, Wesley's parents have done everything they can to promote his healthy development, even as he overcame medical challenges. We invite you to read Wesley's story, and to join us in celebrating his accomplishments and spirit.