Guest Post – CHD Awareness Week

A few days ago on my facebook page I asked for anyone that might be interested in guest posting about Valentine’s Day projects and crafts. Little did I know that this week – February 7-14 is also CHD (Congenital Heart Defect) Awareness Week. I was delighted when Kristine, mother to sweet baby Cora offered to share her story and her cause. So delighted. She is strong voice for her precious daughter Cora, and an inspiration for everything she’s doing in her honor. Did you know Cora was on CNN a few days ago? You might want to hear what she’s got to say. She’s making strides.

When I think February, I think hearts. I have my entire life. I always used to picture pretty red or pink hearts strung up, Valentine’s cards shaped like a heart and heart-shaped boxes of chocolate.

Now, I think of beating hearts, and hearts that are born broken—not that the person is sad but whose heart anatomic heart has a hole, is missing a chamber or valve or has something else wrong.

I never knew that babies could have heart disease until my own baby was born with congenital heart defects (CHD). I didn’t know it when she was born. I didn’t know until after she’d died. Cora was five days old when I was nursing her early one morning. She died in my arms, suddenly and instantly. I found out from the coroner about her CHD.

Without the love and support of my fellow baby loss bloggers, like Franchesca, I don’t know where I’d be. Through their broken hearts—and mine—I’ve learned that my daughters defected heart was and always will be perfect. She was perfect.

Cora isn’t alone. Luckily, these days 90 percent of those that are born with congenital heart disease live to adulthood, but still many die. CHD is a leading cause of infant death. It affects an estimated 1 in 100 babies, and ranges in severity. Cora’s story is just one of many from these little babies born with hearts that didn’t form right sometime in the early weeks of pregnancy.

This week is CHD Awareness Week. When it comes to CHD, I know awareness matters. Mothers like me shouldn’t first hear the phrase “congenital heart” from the coroner. All mothers should know about the most common birth defect.

After Cora died, I learned a simple screening—pulse oximetry—might have prevented our tragedy. It’s simple, non-invasive, doesn’t hurt baby, and is recommended by the American Academy of Pediatrics, American Heart Association, March of Dimes and federal government. Yet, not every baby is screened. I’m working to change that through my site, http://www.pulseoxadvocacy.com.

This February, think hearts—not just the pretty ones we string up as decorations, but also the beautiful tiny broken ones like my Cora’s.

You can read more about Cora at http://www.corasstory.org.

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    Molly says:

    Definitely planning to have this baby boy I’m carrying screened when he is born bc of learning about Cora and CHD on your blog! thank you for the awareness!

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    Amanda says:

    Thank you for sharing your story and your cause!
    Amanda recently posted..Why has this taken me a week to write?My Profile

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    Kristine says:

    My heart is happy seeing Cora’s face here on your gorgeous blog, next to all of the sweet things you’ve done in your daughter’s name. <3
    Kristine recently posted..Proud Parenting Moment: That’s My Daughter on CNNMy Profile

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    Carrie Konig says:

    Wow this is the perfect guest post you could have chosen Fran! Kristine, I am so so sorry for your loss. She is so beautiful! Thank you for sharing Cora’s story, in doing so you are bringing awareness of these lil broken hearts but giving hope that this advocacy can prevent the broken hearts of parents who now know about this screening. I really hope it becomes a normal newborn screening across the US in hospitals!

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    Stephanie says:

    I remember reading all about Cora after learning of Amelia’s heart condition. Cora’s story was one of the first in my introduction to the baby loss community. I remember reading Kristine’s accounts, her posts . . .

    I am just so proud of all the things that Kristine has accomplished in Cora’s name. Seriously, CNN ~ wow! I know that we all are so moved by a mothers love, to keep our children’s memory and names alive, and if we can make a difference ~ to just jump right in there.
    Stephanie recently posted..A Call for StoriesMy Profile

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    Meg L says:

    Wow, this post is an eye opener. I’m so sorry for the loss of sweet Cora. This post has changed the way I think about Valentines Day and February. Keep going in all your work your are doing to creat awareness Kristine…(and that picture? just beautiful that little sweet girl).

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