Starting from the birth of a second child with congenital heart defect (CHD), made Yulis take an active role in a community called Little Heart Community. Over time, this community which consist of various backgrounds and scattered in various cities and islands in Indonesia has been growing and reached about 1400 people. They often visit hospitals and meet patients with CHD.
A CHD is a defect in the structure of the heart and great vessels which is present at birth. Heart defects are among the most common birth defects and are the leading cause of birth defect-related deaths. Causes for congenital heart defects can be genetic, environmental, or both.
Little Heart Community then established a non-profit foundation called the Yayasan Jantung Kecil Indonesia. In this community, Yulis sees how heavy the children struggle to continue to grow and develop well, even more the struggle of their parents. Some are not able to survive, but Yulis and her community don't want to lose hope. Their hope as parents of children with CHD is just one, "keep beating my little heart..."
There are over 35 different types of CHD and each one is different. Some heart defects may not require any treatment at all. Some may only require medication. Some heart defects may require one open heart surgery, while others require multiple procedures and surgeries.
In addition to medication, procedures and surgeries, many children may also struggle with not being able to participate in sports, slower growth and development, emotional issues and learning disabilities.