Congenital Heart Disease Awareness

What I Wish I Had Been Told About CHD

Approximately every 15 minutes, a family learns that their child has congenital heart disease (CHD). Many parents feel inundated by the amount of information thrown at them in this period and understandably may feel overwhelmed.

We’ve partnered with a nonprofit organization, Conquering CHD, on an educational campaign to help families of children with CHD, or adults with CHD, receive expert advice directly from the source and navigate these stressful times.

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It takes a village.

A lot of people are involved in caring for a child or an adult with CHD. From doctors and nurses to social workers, psychologists, and speech therapists, it takes a collaborative, multidisciplinary care team. Congenital heart disease is not something you should journey through alone. Lean on your or your child’s care team!

Learn about the comprehensive care that the Adult Congenital Heart Program—a collaboration between Lucile Packard Children’s Hospital Stanford and Stanford Hospital—provides to children of all ages, teens, and adults with congenital heart disease.

Ask questions.

There is a lot of information out there about CHD. It can be hard to make sense of it all and really understand what it means for you or your child. Ask questions. Talk to trusted resources—your/your child’s cardiologist, surgeon, nurse, social worker, or psychologist, or others who have been there. Write your questions down and save them for a visit, or send an email via MyChart. Every question is important!

In the meantime, here is how the Stanford Medicine Children’s Health and Stanford Healthcare cardiologists have addressed the most frequently asked questions about CHD.

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It’s OK not to be OK sometimes.

Having CHD or caring for someone with CHD is a long and hard journey. It is ok to not be okay sometimes. You are not alone and there is support when you need it. A Stanford Adult Congenital Heart Program cardiologist and two psychologists from Stanford Children’s Health and Stanford Health Care discuss adjustments that many CHD patients are experiencing and share their recommendations for when to get help, how to ask, what to ask for and what are the best ways to maintain good mental health.

CHD requires lifelong care.

Congenital heart disease is a lifelong condition. Even when surgery is successful, or the heart defects are “repaired” and you or your child feel fine, CHD doesn’t go away. CHD is for life. It impacts many other body organs and functions, and people with CHD may have difficulties in school, at work, in relationships, or with daily life. Additional heart-related issues may also arise as the patient gets older. It is important to stay in care with the proper CHD specialists throughout childhood, teen years, and adulthood.

Caring for CHD takes a trusted, team approach: patient story >