CHD awareness month: Let it have purpose.

When I found out about Evan’s heart…I knew that something good had to come out of it.

Yes…we prayed for the surgeries to be successful.  Yes…we prayed for him to have as normal of a life as possible.  Yes…we prayed that his life had meaning and purpose…no matter how long it would be.

I found out about Cora.  Sweet Cora. 

How her mother…a woman who is making it her mission to make sure that her Cora’s life…has purpose.

Kristine is a woman all the CHD community should thank…she is using a tragedy to change and save lives.

Cora’s Story

http://www.corasstory.com

Four years ago, February 7 to 14 wasn’t a special week. I was celebrating my first Valentine’s Day as an engaged woman and had never heard the phrase “congenital heart defect.”

 That November, I gave birth to my first child, a girl we named Cora. I’d had a normal pregnancy, normal delivery and we took her home oh so in love.

Then one early morning, I settled down to feed her. I looked up for a split second, looked back down and my baby wasn’t breathing. She was limp and grey. We rushed her to the emergency room, but it was too late.

Days later, I got a call from the coroner and for the first time in my life I heard the phrase “congenital heart disease.”

I had no idea what it meant. I didn’t know babies were born with hearts that weren’t anatomically normal. I took to the Internet to learn more, and soon was contacted by a mother working around the clock to push for a simple screening, pulse oximetry screening for CCHD. The mom was Annamarie Saarinen with 1in100.

I took up the call. I started yelling, screaming, whispering to anyone that would listen. And people listened. Soon mothers across the country were asking for their babies hearts to be checked with pulse oximetry. I started to get notes that doctors were hearing the mothers too, when the moms said they wanted their babies hearts checked because of Cora, OBs were saying they’d heard of Cora.

I realized that although I could reach hundreds of thousands of mothers through social and traditional media, I could reach them all. So I started in my state. I wrote my state senator, who introduced a bill and that bill was eventually “Cora’s Law.” My home state, Indiana, signed the first piece of CCHD screening into law in May 2011.

Meanwhile, Annamarie kept working too, and all of that work culminated with the addition to CCHD screening to the recommended uniform newborn screening panel nationally in September 2011, but while that’s a huge move forward, it’s still up to states to implement.

Now moms are working around the country on this cause. It’s been awe inspiring to watch new laws passed and the progress so far.

I learned through this experience that if we persistently ask, people will listen. Cora’s name is known around the world. Babies are screened because of her. Sometimes that screening saves their lives.

I couldn’t be a prouder mother.

Please tell every woman you know of childbearing age about CCHD screening.

 

To learn more about Cora, visit http://www.corasstory.com.

To learn more about pulse oximetry screening, visit http://www.pulseoxadvocacy.com.

Share the website http://www.babyheartscreening.com with every pregnant woman you know.