The CHD Care Journey

A roadmap of some key events can help you understand what to expect and feel more in control as you guide your family on this journey. Information is a powerful tool to help you effectively participate in your child’s care and recovery. Learning more can also help reduce feelings like shock, anger, or confusion.

The CHD Journey

The Steps on This Journey

The CHD Care Compass is a roadmap that can guide you through:

Within each of these steps there are multiple topics about what happens next, along with links to additional resources.

As you explore at a pace that is comfortable for you, you can build your confidence and understanding, and begin to plan for your family’s future.

Managing Emotions and Changes

Along the CHD care journey you may have complicated, powerful emotions or other changes in the way you think and behave. It can be hard for family and friends – however well-intentioned – to understand what you are going through.

At times you may feel afraid or frustrated by what’s happening. You may also find it difficult to process all of the information and manage not only the “new normal” of pregnancy, but the “new, new normal” of life with a child who has congenital heart disease.

No parent should walk this path alone. In the CHD Care Compass, you will learn about many types of support and resources available to help your family get through the challenges ahead.

Finding Your Way

While there may be times when you feel isolated, hundreds of thousands of families before you have found their way to a full life with CHD – even if it looks different than what they imagined. You will meet some of these families here.

Real parents share the experiences and feelings they had at key moments in their child’s life. Hearing how they navigated the unknown can inform and reassure you, and provide encouragement along the way.

Medical professionals also share information about key steps in your child’s medical care. Knowing what to expect can help anchor you on the care journey.

No one can change the fact that you are here in this moment, but we hope the CHD Care Compass helps you face the path ahead with confidence, optimism, and strength.