Welcome to our Living With Congenital Heart Defects Community (Formerly “Atrial Septal Defects” Community).
Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
This is an online support group for patients, friends and families affected by Congenital Heart Defects (formerly Atrial Septal Defects). A congenital heart defect is a problem with the structure of the heart. It is present at birth. Congenital heart defects are the most common type of birth defect. The defects can involve the walls of the heart, the valves of the heart, and the arteries and veins near the heart. They can disrupt the normal flow of blood through the heart. The blood flow can slow down, go in the wrong direction or to the wrong place, or be blocked completely.
Within the community, we have discussion groups for various types of congenital heart defects: Transposition of Great Arteries, Tetrology of Fallot, Single Ventricle Defects, as well as Aortic and Vessel Defects and Valve Defects.
Doctors use a physical exam and special heart tests to diagnose congenital heart defects. They often find severe defects during pregnancy or soon after birth. Signs and symptoms of severe defects in newborns include
- Rapid breathing
- Cyanosis – a bluish tint to the skin, lips, and fingernails
- Fatigue
- Poor blood circulation
Many cases of congenital heart disease are diagnosed before a baby is born, when mother gets a prenatal ultrasound. However, it’s not always possible to detect congenital heart defects in this way, and mild defects may not cause any problems until later in life. We have many members who did not discover their congenital heart defects until adulthood. There are many narrative discussion threads about their surgical experiences, and their successful recoveries on the community discussion board.
Living With Congenital Heart Defects is a virtual community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.
Though we get occasional visits from medical doctors, the site is not routinely supported by medical professionals. Nobody here can diagnose you or tell you what your treatment choices “should” be. We might inform your choices by sharing individual experiences and information developed by study as lay people. But Living With Congenital Heart Defects is not intended to replace the advice or treatment of licensed medical professionals. Readers should validate any information they take away from here, against the experience of a licensed medical doctor. Site owners and moderators are not legally responsible for the accuracy of information shared on the site.
We don’t want you to identify yourself or tell exactly where you live: it is important to us that you should be anonymous here. That encourages openness. (And that’s a major way that we’re different from social media and other disease support sites.) Nevertheless, visitors should also be aware that our discussion forums and groups are publicly accessible and frequently searched by Google. That’s why your speech here should be considered “public”. If you’re tempted to write something about another person that you wouldn’t say to their face, then we counsel you to think first. Speech can be consequential.
Living With Congenital Heart Defects is supported by unpaid volunteer moderators who validate and register new members and monitor ongoing discussions, photo postings and blogs. Very often, moderators are themselves patients or family members of patients. Most of the time, moderators tend to keep a low profile, except in their roles as members of the community, especially if they are well-informed about the state of medicine and research.
Joining Ben’s Friends CaregiverSupportCommunity.org is easy: please check out the pointers on this Youtube video , then tap “Join” and “Sign Up”.