Support Groups for Parents of TGA / CHD
- Mended Little Hearts (part of Mended Hearts, Inc.):
- A national peer-to-peer network providing local support groups, “parent matching,” educational materials for families of children with CHDs.
- Conquering CHD
- Focuses on support, education, and research for congenital heart disease; offers a list of support groups and community connections.
- Facebook & Online Family Groups:
- Example: a Facebook group for those impacted by TGA (“Born with TGA – Parents and Families” or similar) offers open community for peer conversation.
- Adult Congenital Heart Association (ACHA)
- Resources, events, newsletters, and community support for teens and adults living with CHD.
- Heart & Blood Health Support Group
- The Mayo Clinic Heart & Blood Health Support Group is an online space where people share experiences and get support for heart and blood vessel conditions.
- Children’s Heart Foundation Family Network
- Research-focused but also provides education and family resources.
- Intermountain Healing Hearts (IHH)
- Online and phone support and parent mentor connections for families and adults with CHD (including TGA).
Resources
Letter From Dafni
If you’re reading this, your baby was probably just diagnosed with Transposition of the Great Arteries. I want you to know something right away. I was that baby.
I was born with TGA too. I had open heart surgery when I was only a few hours old. I didn’t know what was happening, but I know you do, and I know that is really scary.
I don’t remember my surgery. I don’t remember the tubes, the machines, or all the hospital noises you are hearing right now. What I do know is that I grew up. I went to school, made friends, laughed, argued with my parents, stressed about homework, and thought about what I want to do in the future, just like any other kid.
Right now it probably feels impossible to picture life after this. It might feel like your life is split into before diagnosis and after diagnosis. I just want you to know that the after can still be happy and normal and full of good moments, even if it is not what you expected at first.
Some days you might feel strong and like you understand everything. Other days you might feel scared, exhausted, or overwhelmed. That does not mean you are doing anything wrong. It just means you love your child.
One day your child might be sitting in class, playing a sport, or talking about what they want to be when they grow up. They might not even think about their heart that much. That is basically my life now. I actually only started really learning about my condition recently.
I cannot promise this will be easy. But I can promise that hope is real. There are kids like me who went through this and are here, healthy, and living normal lives.
Take things one step at a time. Ask questions. Lean on people around you. And when it feels like too much, remember there are people in the world right now who started exactly where your baby is starting.
With hope,
Dafni