Welcome to the heart community! Whether you are a parent raising a child with CHD, an adult living with this chronic condition, or you just love someone affected by the disease, you are welcome here. Get plugged in to the network of other individuals who know exactly what you are going through.
Living with a chronic medical condition or caring for a child with complex medical needs can feel isolating. You are not alone. Social media can be a powerful tool to connect with others who are going through the same experiences.
You know your child best–that’s why it is so important to be involved in their medical care. Here are some tips and resources for advocating for your child during the time when they need you most.
Hospital life can be hard to navigate especially shortly after your child’s birth or initial diagnosis. Here is a resource written by the Hill family, a cardiac ICU handbook of sorts, written while they stayed for months in the hospital with their daughter, Eden.
Caring for a child with complex medical needs can be overwhelming and place a financial burden on families. There are resources available that can help.