Wednesday, October 27, 2010

Heart Mom Help

Hello, fellow heart mamas! I need your help...  I have a Google Alert set up to notify me whenever there is a new entry on the Internet that includes "HLHS" or "Hypoplastic Left Heart Syndrome." I specifically look through these for entries from moms-to-be who get the shocking and unexpected diagnosis of HLHS for their babies and post on message boards (BabyCenter, etc.) looking for help/hope. I have a "canned" response of sorts that I use as my basic reply (sharing Chase's story, a link to my blog, etc.) but I also want to include a list of links to helpful, relevant information on the diagnosis. I of course think of sites like LittleHearts (I know I read through EVERY SINGLE HLHS STORY on this site before Chase was born) and the U.S. News Best Children's Hospitals: Heart & Heart Surgery report, but I know there are a handful of other websites that have helpful information about the diagnosis and the prognosis for the promising future these kids have ahead of them. If you have any go-to links that you'd like to share, I'd be super grateful!

I know when we got Chase's diagnosis, I spent a LOT of time on the Internet and was so discouraged by my findings. A lot of the research and statistics out there are NOT at ALL current and I'd want to save these new heart moms the anxiety and fears of reading that kind of stuff and instead point them to some sites that give accurate info and provide hope.

Thanks a bunch!

1 comment:

  1. I co-own the Yahoo email group Hope for Children with HLHS. It is a wonderful group and over 1000 members who have lots of advice to offer, and support to offer. Here's the link:

    Becki M.