My son was born with what is often called a fatal combination if not addressed quickly: hypoplastic left heart syndrome with an intact atrial septum. After a looong year (4 open heart surgeries within 8 months, 3 caths, 5+months in the hospital) he is doing much better, thanks to an awesome CT surgeon.  I'll look for the websites that were helpful to me and post them after I find them.
ETA-These are good ones:
It’s My Heart » Home
The Children's Heart Foundation
Congenital Heart Information Network
__________________
Signed with facilitator 1/23/07  Profile completed & sent 2/07
M a t c h e d ! 8/23/07  Cameron is born 11/10/07  FINALIZED!!! 4/3/08
Cameron is diagnosed with Hypoplastic Left Heart Syndrome 11/10/07
Life is beautiful, but it's complicated.
We barely make it.
We don't need to understand,
There are miracles, miracles.
Yeah, life is beautiful.
Our hearts, they beat and break. (Vega 4)
Last edited by devildogwife : 12-02-2008 at 11:18 AM.
|