I recently found this blog, which I want to share with you all. A wonderful heart mom & CHD warrior for awareness, named Kelly, started it in honor of her little girl, Chloe. Chloe was born with a rare CHD called Taussig-Bing which wasn't discovered until 9 hours after she was born. Kelly's intuition & a Pulse Oximetry Screening (not standard on newborns) confirmed her CHD. She's fighting to make the Pulse OX screenings mandatory in her home state. This could detect CHDs in newborns BEFORE they go home. Many babies go home with their CHD undetected and the problem worsens, possibly leading to death. Her blog is choc full of info on CHD, and she has a page of heart babies, including Kaia.
Click here!
Congenital heart defects are the #1 birth defect. This year, nearly 40,000 children will be born with one. Kaia was my baby, but yours could be next. Yet, CHD still has very little research and funding. It's up to us to change that. The only way to prevent this defect is by knowing the causes of it.
It's really hard to fight for awareness once you've lost your heart baby. But we have to do it for our future children and yours!
Sunday, January 10, 2010
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Kelly does awesome work. Glad you found her! I love what you did with the photo on your blog. Your little angel looks so darling! If you guys aren't doing anything on Feb 13 - consider having a few people over to share what you know about CHD, your experience, newborn screening. Whatever moves you. I would be honored to include you on the 1in100 roster for that day. Hope it'll be a big deal, yet very personal. Hope you and yours are well in this New Year. :) Annamarie, 1in100 on Facebook and http://1in100.org/
ReplyDeletehey lady! I saw that yesterday and was going to email you about it. I'm interested in hosting. Is the media kit available yet? I would like to post a blog about it (and you and your massive work with CHD awareness) when the info is ready. I'm not sure if anyone from cleveland has offered yet.
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