Treatment and Hospital Stay
Being in the hospital can be overwhelming at any age. These resources help you work with your care team to be active in your care.
Guided Questions Tool
A list of questions to ask your care team.
Transparency - Understanding the Data
Patients and families deserve essential information to help make important health care decisions. As this data becomes available it can be very hard to understand. It is our hope that this resource can help.
The Care Partnership Pyrmaid
A guide to things you can do with your child in the hospital depending on how sick they are.
What Matters to Me
Help your care team understand what your goals are.
Promoting Mental Health in Parents of Children with CHD
In order to take care of your child, you need to take care of yourself. Learn what is normal, when to get help and how.
Mental Health - Beyond Survival
We often shy away from discussing Mental Health, but in this blog series, patients share their stories and their struggles. We also hear from a psychotherapist, who has personal experience with CHD. Articles include: Brittany's Story, Living with PTSD; Beyond Survival, the Struggle with Anxiety and Depression - by Sydney Taylor; Courtney's Story, A Mom's Perspective; Redefining "Of Course" - By Christina Barbera; Catherine's Story; and A Q&A with Austin Wilmot.
Social Security Disability Benefits - Children
If your child has a congenital heart defect, he or she may be eligible for Social Security disability benefits. The Social Security Administration (SSA) offers monthly financial aid for people of all ages who have serious conditions or illnesses. A CHD will not automatically qualify with a diagnosis alone, but many children with heart problems are eligible for assistance.
Social Security Disability Benefits - Adults
Tens of thousands of adults are thriving with congenital heart defects. While many are able to live full lives, it’s possible that at some point your heart function will decrease and you’re unable to maintain employment. If you’re no longer able to work due to your heart condition, you may be eligible for Social Security disability benefits. The Social Security Administration (SSA) offers monthly resources for people who cannot work. While a CHD does not automatically qualify, thousands of adults may be eligible.
A Social Worker's Perspective on Medical Bills
Take a look at how to better gear up for the financial stress that will comes with paying for CHD care. This article offers great advice on how to work with various professionals and organizations to better prepare for the medical bills.
Medical Expenses - Suggestions from a Heart Center Director
Learn how to gain a little piece of mind and take control when the medical bills are rolling in. This resource provides a step-by-step process that can alleviate some of the stress that families may have when it comes to those daunting bills.
2018 AHA/ACC Guideline for the Management of Adults with Congenital Heart Disease
In 2018 the American Heart Association and the American College of Cardiology released an update to the 2008 guidelines to care for adults with congenital heart disease. This update includes a new classification system for specific lesions, as well as the recommended components of a comprehensive ACHD program. Follow this link to a pdf of the complete guidelines.
“PCHA means that I have someone fighting to make sure I have access to information that I can understand and for legislation that impacts my future health.” – TrinityFull Story>