As you (should) know, Feb. 7-14th is Congenital Heart Disease (CHD) Awareness Week. I recently became familiar with CHD by learning from an amazingly strong mama on twitter. She is writing a guest post here today and I strongly urge you to read it and follow her on her mission. She is one incredible woman!
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How Baby Dickey saves lives. A guest post for Congenital Heart Disease Awareness Week.
For those who don’t know me, my daughter, Cora, is a good friend of Ryan and his momma, Emily. They never met, but they are forever linked. Here’s why.
Emily and I were “bump buddies,” meaning we followed each other’s pregnancies and moaned and groaned about pregnancy aches to each other on Twitter.
I gave birth to Cora on November 30, 2009. She was dead by the time Emily delivered Ryan a few weeks later.
Cora died in my arms while I breastfed her. She hadn’t been sick. We didn’t know about the congenital heart defect that took her life until after she was dead.
I immediately took to Twitter and social media to spread Cora’s Story. Emily helped in every way possible.
She sent me a picture of herself wearing a bow I sent her in memory of Cora while in labor at the hospital.
And then, after Ryan was born, she sent me this tweet. And, I wept.
See, I learned through research after Cora passed away about a simple test that might have saved her. It’s called a pulse oximetry test. When conducted on a newborn at between 24 to 48 hours, the non-invasive, quick, painless, cheap test can provide early detection of congenital heart defects.
I wept because Ryan was the first baby to ever get tested because of Cora’s work through me. I wept because lives are saved one at a time through spreading awareness and lobbying for newborn screening.
Several groups are currently working to make pulse oximetry tests standard for newborns, but until then, I’m asking women to ask to have the simple test run on their baby. The test doesn’t catch all congenital heart diseases, but it is a start.
I work for Cora now. Raising awareness to bring more research funding and hopefully lower the occurrence of CHDs. Congenital heart diseases are the most common birth defect, reportedly occurring in about one in 100 babies. Luckily, Ryan wasn’t one of those one in 100.
But, unfortunately, many are affected. According to The Children’s Heart Foundation, “CHD is the leading cause of infant death in the US and in every country around the world.”
February 7 to 14 is congenital heart disease awareness week. Help Cora and I spread the word.
Kristine Brite McCormick writes about Cora (almost) daily on her blog http://www.corasstory.org. If not on her blog, she can be found on Twitter, @kristinebrite or Cora’s Facebook Fan page, telling Cora’s Story. Follow Kristine for more information about congenital heart disease or to learn more about the acts of compassion and kindness Cora has inspired.
Is it 24 – 28 hours? I did not realize it was a 4 hour window for recommended testing.
Kristine you know how much compassion I feel for your loss and how much I am amazed by you in your efforts to spread this message in Cora’s honor. Cora is saving lives. Emily, thank you for hosting. I posted the link to this post on my local baby board on one of “those” forums. I hope many people read this.
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Hi Kia! It is 24 –48 hours! Opps. I’ll send Emily an email. That’s my mistake, not hers.
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I have linked this post up on my facebook. My son was born about a week and a half before Cora (if he had been a girl, that actually would have been his name!) so we did not do the test, but I will be doing it for my next (and telling all my expecting friends about it too)
Thanks to Cora & her mommy for what they are doing for so many other babies <3
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Even though Cade is now 3 and seemingly completely healthy, I wish I could have him checked head to toe, inside and out right now! I can’t imagine ever losing a child! I will definitely be asking my doctor about this at my next appointment and getting the test for this baby. Thanks for the great information and touching story!
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Thanks Breanna– Some doctors don’t know that pulse ox can screen for CHDs. I’m sure your little one won’t be one of the one in 100, but it’s always good to make certain. The pulse ox is a start. Unfortunately, nothing catches CHDs all the time. But, we’ve got to start somewhere. The number one birth defect, who would have thought.
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[…] February 11, 2010 I learned that this is Congenital Heart Disease week from Emily’s blog Baby Dickey. CHD often goes undetected until it is too late. There is a simple test, a pulse oximetry test, […]