What I Wish I Had Been Told About CHD

Join Conquering CHD and physicians from Stanford Children’s Health and Stanford Health Care in a collaborative campaign. What I Wish I Had Been Told About CHD enables patients and families to provide peer support, reassurance, and connection.

There is a lot of information out there about CHD, and it can be exhausting navigating through all of it or determining which source is trustworthy. In partnership with Betty Irene Moore Children’s Heart Center at Stanford Children’s Health – Lucile Packard Children’s Hospital Stanford, we’re launching an informational series on CHD to hopefully help you or your child navigate the CHD journey more easily.

Follow the What I Wish I Had Been Told campaign on social media using the hashtags #ConqueringCHD and #AskStanfordCHD. The full details will also be updated below.

It takes a village.

There are a lot of people involved in caring for someone with CHD – doctors, nurses, social workers, psychologists, therapists and more. Congenital heart disease is not something you should journey through alone. However, not all care centers are the same. For teens or adults with CHD who may have needs beyond heart care, it takes a collaborative medical team. Consider partnering with an accredited ACHD comprehensive care center that includes various specialists working closely together, to deliver strong and consistent outcomes across a variety of congenital heart conditions.

Who is the most important specialist in your CHD Village? Post in the comments here.

Find your village with our State Chapter Network and online support groups.

Ask questions.

There is a lot to learn over a lifetime with CHD. Talk to trusted resources – your cardiologist, surgeon, nurse, social worker, psychologist, and others who have been there. Write your questions down and save them for your next visit or send an email via your electronic medical record. Every question is important!

Not sure what to ask your care team? Conquering CHD’s Guided Questions Tools can help.

Stanford Children’s Health – Lucile Packard Children’s Hospital Stanford and Stanford Health Care cardiologists have addressed their most frequently asked questions about CHD.

It’s okay to not be okay sometimes.

Managing your CHD, or caring for someone with CHD, is a long and hard journey. You are not alone and support is available.

Clinicians are aware of the mental health challenges patients and families are facing. Psychologists at Stanford Health Care recently shared their recommendations for how to ask for help and maintain good mental health on the HeartTalks Podcast. Listen to an excerpt from this podcast, answering important questions about mental health or visit the full podcast on the HeartTalks page.

Conquering CHD provides a storytelling platform for all patients and families. Check out this blog series dedicated to mental health or share your story with us here.

CHD requires lifelong care.

Even when surgery is successful, heart defects are “repaired,” and the patient feels well, CHD doesn’t go away. It impacts other body systems, 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, adolescence, and adulthood. Conquering CHD provides resources for patients and family members across the lifespan.

Kilan, a recent college grad, successfully navigated transition from pediatric to adult care with the help of the ACHD program at Stanford Children’s Health – Lucile Packard Children’s Hospital Stanford.

Wrapping up our What I Wish I Had Been Told About CHD campaign, we were joined by Dr. Anitra Romfh and Dr. Richard Shaw from Stanford Children’s Health and Stanford Health Care, for a live Q&A on Facebook.

Thank you to the patients, families, and providers who made this campaign a success. Together, we are #ConqueringCHD!

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