Musings of a Marfan Mom

CHD Week: Cora's Story

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Today I want to talk about a little baby named Cora, and what she’s doing for babies all over the country who haven’t been born yet.

When Cora was born, she was perfect. She had a great Apgar, a mom and dad and extended family who adored her. By all indications, she was a perfectly healthy baby. But on Dec. 6th, 2009, Cora died while breastfeeding. She was only 5 days old. The coroner determined that Cora died from an undiagnosed congenital heart disease (CHD).

It was after this tragedy that I met Cora’s mother, Kristine, on Twitter and I’m proud to count her a friend. I’m in awe of Kristine. She has channeled her pain into creating the organization Cora’s Story. Cora’s Story lobbies for pulse oximetry tests to become standard for every child. They are a quick, inexpensive test that checks a baby’s oxygen levels, which can detect a CHD. Even if the pulse ox is not standard in your state, you can (and should) still ask for the test to be performed on your child between 24-48 hours after birth. I had never even heard of this test before talking with Kristine.

Why am I telling Cora’s story to all of you now? This week is Congenital Heart Disease Week. Did you know that CHD is the #1 killer of babies? Here are some other CHD facts you might not know:
– Between 1 in 70 and 1 in 100 babies are born with a CHD of some kind.
– This makes it the more prevalent birth defect.
– Many CHDs can NOT be detected on the 20 wk ultrasound.
– There are over 30 kinds of CHDs (also called congenital heart defects) known, though not all of them can be detected with any of the various types of equipment currently available.

So, what are some things that you can do to help?
– Tell everyone expecting mom you know to request a pulse ox test for her newborn!
– Blog about CHD Week and link up your blog post on Kristine’s website.
– Add a CHD awareness button to your blog.
– Check out Baby Dickey’s website for a list of other ideas (and a giveaway).
– Become a fan of Cora’s Story on Facebook.
– Send a free e-card from Punchbowl! For every card sent during the month of Feb., they’ll donate to the Children’s Heart Foundation.

The more awareness we raise, the more babies we can save!

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5 Comments

  1. I’m quite proud to count you as a friend. Thank you for telling Cora’s Story.

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  2. What a terribly sad story but how wonderful that this condition is getting more publicity and awareness.

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  3. Sunday afternoon I had a special Radio Show for Cora also, where Kristine was able to actually talk about her experience for the first time in front of strangers (not type).
    It was very touching, and we were both crying on the air.

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  4. hello passed by from SITS..I didnt even knew this disease existed. Thanks for sharing

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  5. Wow. Thank you for sharing about this. I didn’t know that a pulse ox test on a newborn could reveal so much.

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