Living with CHD - Adults
Estimates suggest that there are more than 1.4 million adults living with CHD in the U.S. Thanks to improved treatment for congenital heart disease, there are now more adults with CHD than children. However, there is no cure for CHD and adults face unique health and personal challenges as a result. You are not alone.
One year after surgery, Adult CHD patient, Edward Bauman, decided to mark the occasion by creating a video that shares his experience preparing for and immediately following his procedure. Watch to hear about his journey and his tips and tricks that may help on yours!
Teen and Adult Patient Facebook Group
This closed Facebook group is a place for teens and adults with CHD to connect with others who face similar struggles and celebrate similar victories. This group is for teen and adult patients only.
What is ACHD
Understanding Congenital Heart Defects into Adulthood
This CardioSmart resource, from ACC, breaks down all aspects of Adult Congenital Heart Disease, what it is, how to manage your care, and where to find additional support .
Arrhythmias and Cardiac Devices
Complications from surgery, scar tissue left behind, and an underlying disease can bring about arrhythmias in CHD patients and lead to need for a cardiac device.
What Genetic Testing Can Reveal About ACHD
In this webinar, courtesy of Children's Hospital Wisconsin, Medical Geneticist, Dr.Gabrielle Geddes, discusses general genetic concepts, genetic causes of CHD available testing, and reasons one might consider being tested. Watch to learn more about genetics and CHD.
Managing Your Care
Top 10 Things to Remember as an Adult with CHD
There is no cure for CHD. Even if you are feeling well, it is important to be aware of these key details about your health.
This interactive checklist guides patients gradually through the process of transition from pediatric to the appropriate adult care and helps them take ownership of that care. This resources is set up in phases, rather than by age, making it useful to patients across the lifespan.
Guided Questions Tool - ACHD Edition
A list of questions for ACHD patients and families to ask their care team.
Guide to Your ACHD Care
This resource offers tips for maintaining care through adulthood and includes a summary chart of the ACC Guidelines to ACHD Care.
Parent Guide to Your Child's Future ACHD Care
This resource offers tips for helping your child maintain care into adulthood and includes a summary chart of the ACC Guidelines to ACHD Care.
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.
Congenital Heart Disease Clinic Directory
The American College of Cardiology provides the ACC Congenital Heart Disease Clinic Directory as a service to patients, families and providers to find specialty congenital heart disease care. This directory allows users to search - by name or location - for services, centers, and cardiovascular specialists in pediatric cardiology and adult congenital heart disease.
ACHA Clinic Directory
Travel with confidence knowing where the nearest specialty clinic is located.
ACHA Personal Health Passport
Keep your necessary medical information in your purse or pocket by recording it in this booklet.
Understanding Health Insurance for College Students & New Grads
The current health insurance system in the U.S. can be a complicated system to navigate, so this guide is designed to help students understand staying on their parents plan, the Affordable Care Act, how to choose the right plan, and common insurance terms that every patient should understand.
School and Work
Top Things to Know: College Students with Congenital Heart Disease
A congenital heart defect (CHD) is a lifelong condition. While a CHD is never “cured,” there are plenty of opportunities to thrive in college with the disease if you remain healthy and stay in medical care. Here are some tips to help your move to college with a CHD.
Social Security Disability Benefits – Adults
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.
Family and Medical Leave Act (FMLA) Fact Sheet
As adults, we can't have our parents call us in sick to school when we have extended medical needs or family to take care of, but we may not be eligible for extended disability leave from work. The Family Medical Leave Act (FMLA) could be a good option for you, if you or your loved one need more than a couple days off of work to manage a medical issue. Check out this resource to find details on what and who FMLA covers.
20 Scholarships for Students with Health Conditions
This guide provides a look at some scholarships available for students with medical conditions, as well as advice on how to win them. While several cover other conditions some do pertain to those with CHD. *Please note, this resource is not maintained by CCHD, scholarship info is updated by a third party.
Family & Lifestyle
Taboo Subjects Blog Series
This series takes a look at a few of the “taboo” subjects that come up when thinking about life with CHD. Topics include: Tattoos, Career, College, Contraception and other "adult" activities.
Toolkit: Talking to Your Children about Your Health
This resource, developed by NHS University Hospitals Bristol, offers tips on how to talk to your children about your health. With consent, the format has been modified.
Pregnancy and CHD Blog Series
This series discusses several different aspects of pregnancy and CHD.
Toolkit: Planning for a Family
This resource, developed by NHS University Hospitals Bristol, offers tips on first steps in the decision to plan for a family while living with chronic illness. With consent, format has been modified.
Toolkit: Managing Stress
This resource, developed by NHS University Hospitals Bristol, offers tips to manage the stress that can accompany chronic illness. With consent, the format has been modified.
Toolkit: Managing Anxiety
This resource, developed by NHS University Hospitals Bristol, offers tips to manage the anxiety that can accompany chronic illness. With consent, the format has been modified.
Toolkit: Managing Depression
This resource, developed by NHS University Hospitals Bristol, offers tips to manage the depression that can accompany chronic illness. With consent, the format has been modified.
Conquering CHD Stories
Emersynn was born November 2016 and is our miracle baby! She is doing absolutely amazing! At our 20 week anatomy scan, we found out that our little girl has a congenital heart defect (CHD). Shortly after this news, we were referred to a high risk OB and a pediatric cardiologist. When we saw the pediatric...Full Story>