Here is a post from facebook 1 in 100.
I am so happy to read this.
Finally I am not the only one screaming in the desert.....
The internet is a powerful tool. Hopefully more and more parents can get life saving information !
Post 1 in 100
1in100 Parental Oddity #20: This is about as direct a post as you will ever see here, so bear with me. Part of why 1in100 exists is to connect families. The first section created on 1in100.org was Medical Rockstars. Why? Because it was a place to list the physicians, medical teams and hospitals that have had the most impressive outcomes, particularly with the worst possible cases of CHD. So here it is: please, take the time to do your research and listen to the counsel of others. These families have walked down the CHD road. They aren't replacing doctors, but can offer help and wisdom on a specific diagnosis and courses of care. And they will share the good, the bad and the ugly. There are babies all around this country receiving medical care for critical heart defects that just are not in the right place. The more you know, the more you can do. Second, third and fourth opinions. They matter. #1in100ost 1in 1000
Image taken Febr. 2010 Stanford University Campus. Rodin Gate of Hell.
Will and I had our own private thoughts encountering this stunning creation.
I feel your pain...I too have felt like the only parent harping on this issue...The most frustrating thing is that nobody listen...Makes you almost want to just give up.
ReplyDeleteKristen