For parents who have children diagnosed with congenital heart disease, it can feel devastating. Although CHD is a serious disease, it is manageable. This means that after a diagnosis, you have a lot of decisions to make and responsibilities to deal with.
Having a child with CHD means that you will need to deal with finances, and be an advocate for your child. Oftentimes, it may seem like your cardiologist cannot answer all of your questions, which leads you to do your research. One of the best resources for parents of children with congenital heart disease are CHD Support Groups.
What is CHD?
Congenital heart disease is the most common type of birth defect. Overall, babies with CHD can live long and healthy lives. Despite this, it was not the case for many years.
Congenital heart disease is present at birth and affects how the heart works. These affect how blood flows through the heart and to the rest of the body. CHD comes in many different forms, from a small hole to a severe or poorly formed heart. 1 in 4 babies born with CHD has a serious heart defect. Those with a serious heart defect will need surgery within the first year of life.
Types of CHD
There are a variety of different forms of CHD:
- Atrial Septal Defect
- Atrioventricular Septal Defect
- Coarctation of the Aorta
- Double-outlet Right Ventricle
- d-Transposition of the Great Arteries
- Ebstein Anomaly
- Hypoplastic Left Heart Syndrome
- Interrupted Aortic Arch
- Pulmonary Atresia
- Single Ventricle
- Tetralogy of Fallot
- Total Anomalous Pulmonary Venous Return
- Tricuspid Atresia
- Truncus Arteriosus
- Ventricular Septal Defect
What is a Support Group?
Support groups are a place for members to talk and provide each other with various types of help. When it comes to a CHD support group, you will discuss different aspects of living with CHD. These groups will offer you the ability to discuss issues you are dealing with and also come together for sharing coping strategies. These groups can allow you to feel empowered and offer a sense of community.
How to Raise Awareness About CHD
Although support groups are one way to raise awareness about CHD, there are also other ways to do so as well. Medical IDs are a method of raising awareness of congenital heart disease, especially when an emergency arises. Because children with CHD do not look sick, this can be an issue.
Those with congenital heart disease have compromised immune systems. It means that in an emergency, things can become dramatically worse. With medical IDs and easy access to medical records, it can help to raise awareness about CHD in your child.
How to Find CHD Support Groups Near Me
At Conquering CHD, we offer a variety of CHD Support Groups. These groups are extremely helpful to be in contact with organizations, as well as people who can offer support. These groups will allow you to find parents who are dealing with similar issues, to ensure that all of your questions are answered.