Not alone!!

Mel and I both discovered early on in our HLHS journey that you can research the internet too much…way too much. When we first learned of Mary Clare’s CHD (Congenital Heart Disease) we did just that, way too much web-surfing on the matter. It was overwhelming, upsetting, and very frightening. Most information on HLHS, in specific, is very discouraging and we now know that much of what is out there is inaccurate.

For the most part, I don’t research HLHS anymore…Mel and I both had a crash course while we were in Charleston and I think we both learned way more about HLHS, the heart and heart surgery than we even wanted to know, but it can be a source of comfort/support to learn about other children facing the same struggles as our sweet Mary Clare.

I found the greatest website that supports CHD and is raising awareness. A friend (I met at MUSC who also has a baby with a CHD) sent me a link and told me that she knew the little boy whose photo is on the home page. He has HLHS. It displays a photo of him at 12 months and then 10 years later!

It’s pretty amazing to read the stories of these children and see that they are leading “normal” lives and doing great! (Go to “Stories” section from top menu bar) Maybe one day when we are in the clear and after her third surgery, I’ll post Mary Clare’s story!

Go to www.little hearts.net