Medical professionals, parents, and care advocates partnered to create the CHD Care Compass for families of the nearly 1% of babies born with congenital heart disease in the U.S. annually. We can help you navigate every step of the CHD care journey, from diagnosis to life at home after surgery.

Your World Changed in an Instant

Before your child’s CHD diagnosis, you may have worried about the changes – big and small – that come with pregnancy or life after baby: finding the right childcare, making financial decisions, or picking the perfect stroller and car seat.

As soon as you learn that your child has CHD, your worries greatly increase. You wonder if your child will live and what their quality of life will be. You are thrown into a completely new environment, with many appointments in clinics and hospitals, among a sea of unfamiliar people. Physicians and nurses give you complex information in what may often sound like another language. You may question how you can best help your child in this new and complex world at one of the most stressful and critical moments of your life.

Getting from Overwhelmed to Empowered

In this whirlwind of stress and need, you may initially feel helpless or overwhelmed by all of the information and unknowns. Stress can compromise your ability to think clearly, ask the right questions, or absorb everything the care team is saying about your child’s condition and treatment options.

While there are many things you cannot control in this situation, having a basic understanding of what lies ahead can help you get a full picture of life after diagnosis – and see beyond just the next doctor’s appointment.

As you learn more and understand more about the CHD care journey, you will:

  • Be better prepared and empowered as your child’s caretaker and protector
  • Be better able to ask the right questions and set reasonable expectations
  • Feel more in control of your reactions and decisions – even as you acknowledge that the path ahead is uncertain

How the CHD Care Compass Can Help

In simple language, the CHD Care Compass provides a step-by-step summary of the typical path:

  1. During and after a diagnosis
  2. In the hospital
  3. After discharge

We do not provide medical advice or information about your child’s individual condition and treatment plan, which you will get working closely with your care team. Instead, we outline common events and needs from the parent’s perspective.

CHD Care Compass

Here You Will Find

  • What to expect

    Practical guidance that helps you understand what to expect

  • Understanding

    Empathy and support for the emotions you may be experiencing

  • Healthcare system tips

    Information and tips to help you successfully manage your child’s care within the healthcare system

You can access this resource at any time or place, read at your own pace, and review topics as often as you need to. Learn more about the steps and emotions on the CHD care journey, and see a roadmap.