Congenital Heart Disease Support Group

Congenital heart disease is heart disease in the newborn, and includes congenital heart defects, congenital arrythmias, cardiomyopathies, and hypertrophic cardiomyopathy (HCM). CHD can describe a wide variety of different abnormalities affecting the heart. CHD occurs when the heart or blood vessels near the heart does not develop properly before birth.

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deleted_user 03/13/2014

I am currently 33 weeks pregnant and my daughter has been diagnosed with HLHS. I've avoided doing internet research throughout my pregnancy, as it has the tendency to make me paranoid. However, the closer to delivery I am getting, the more unprepared that I feel.

Is there a parent out there that is willing to talk and give advice?

ReenBee 01/06/2015

I had a son born in 1987 with HLHS. I haven't kept up with the medical advances but I'm sure they've made great progress with this condition since then. Back then, there was no indication prior to delivering the baby, that something was wrong so it came as a complete shock.
Are you near a major children's hospital? I cannot give you any advice but wanted to offer you a hug and a listening ear, if you ever need one. Keep the communication open with your doctors and nurses. Lean on your friends and family and let them help you during this time. If anyone asks you what they can do, give them some suggestions. There really isn't any way to prepare for this. Keep thinking positive, and don't be afraid to ask questions. Take care of you through it all!

enchantress 08/12/2017

They're are tons of support groups for parents such as mending little hearts, CHIN, and a few others. I would not recommend American heart association (AHA) they don't do much for the CHD community. And for when your child starts to get older I would recommend Adult Congenital Heart Assoiation (ACHA). I'm sorry this is so long, but I do want you to know that was born in 2001 with HLHS and I'm doing fantastic! I got my three surgeries and haven't needed Heart surgeries since then. I have needed to go on medication for other problems. Just to give you a heads up about stuff I've dealt with. For me I didn't really start eating until after my third surgery. I have learning disabilities and I do know for sure if it is linked with my heart but it most likely is because I had mixed blood up until my third surgery I believe. So the low oxygen rates could have damaged my brain. But with that being said I have a 4.0 gpa taking honors classes. I just have to work my but off. And I would highly recommend for you and your child and rest of family to see a therapist and if you can, see one who specializes in chronic illness. It has helped me tremendously! And I only started going about two or three years ago! And do not be afraid to ask the doctors questions! Make a list before going to see the doctor. Knowledge is power. And I'm sure you will be a great heart mom :)

Best wishes!

And sorry about this being so long.

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