Living with CHD - Children
There is no cure for CHD. As children grow, you may find that you don't have to go to the doctor as often. But, you may start to see differences in how your child with CHD develops, behaves, or learns. These resources can help you know more about these differences and where to get help. Even if your child feels fine, it is important to keep going to the doctor and tell them about any differences you may notice.
Supporting Development in Children with CHD
Children with congenital heart disease (CHD) are exceptionally resilient. After extensive surgeries and hospitalizations, they typically go on to live full, meaningful lives. However, some children with CHD experience developmental and learning differences and benefit from extra help to succeed in school, social relationships, and future employment.
The Importance of Dental Health - a CHPHC Resource
Young children with congenital heart defects (CHD) are at greater risk for tooth decay because their baby teeth may have weak enamel. Learn more about taking care of your child's teeth.
Getting Help at School - a Complete Resource Guide
Loads of great information on navigating a school’s system without a dedicated school liaison. A complete resource list is included at the end of this post for easy reference.
The Care Partnership Pyramid
A guide to things you can do with your child in the hospital depending on how sick they 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.
What Matters to Me
Help your care team understand what your goals are.
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.
Extended Stay Notebook, Strengthening by Fire
Helping families track and organize information during an extended hospital stay.
Doctors Help Baby: A Book for Young Siblings of CHD Patients
"Doctors Help Baby" is the first book in a series designed to assist parents and families walk a child through a younger sibling's hospital stay for CHD. This book is designed to help you navigate the hospital experience with toddler-age children so they can better understand what is happening to their newest sibling and process their emotions.
Baby Has a BooBoo: A Book for Young Siblings of CHD Patients
"Baby has a Boo-boo" is the second book in a series designed to assist parents and families walk a child through a younger sibling's hospital stay for CHD. This book is designed to help you guide children through the healing process of their sibling.
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.
A Patient Guide to Heart Surgery
A Website Presented by Cardiothoracic Surgeons Committed to Improving Patient Care
Conquering CHD Stories
Eva Burt Edinger
“My CHD went undetected for the first year and a half of my life. After being diagnosed with an Atrial Septal Defect, I underwent open heart surgery, spent several weeks in intensive care, and was not expected to live. Now, as an adult, I have no physical restrictions and I live life to the fullest!...Full Story>