Because no mother should learn about congenital heart disease from the coroner

This story is heart-wrenching, to say the least.  I remember the day The Bloggess announced this on twitter.  What would have killed some people, Kristine has turned into a source of strength to help others.  Thank you, Kristine.  We’re so sorry for your loss.

-mayopie

By Kristine Brite McCormick

My daughter died in my arms while breastfeeding. She was five days old. We didn’t know she was sick until she was dead.

I’ve typed those words so many times. I’ve worked so hard to spread her story that I’m almost immune to them.

But, when I tell her story to someone face to face or on the phone, the true horror of what I experienced the early morning of December 6, 2009 reads in their faces and their voices. My pain reflects back to me when they gasp and cover their mouths, or when they start shaking their heads.

I’ve learned people have a routine when they ask about the death of a child, and they expect me to say that my daughter, Cora, spent months in the NICU or we knew she was sick in utero and she was born to a roomful of doctors who whisked her away to surgery.

So when my story takes a turn from the unexpected, everyone reacts with such strong horror. I start to feel bad for them. I can read the pain on their faces. Especially the parents, they seem to experience my shock almost as deeply as I do.

They can’t believe Cora was never sick. I had a completely healthy pregnancy and delivery. She passed all exams by so many nurses and doctors in the hospital.

One minute, she happily fed with the sleepy drunk baby look on her face from my breast seemingly healthy and happy.  The next, I looked down and she was limp, face covered with blood, and I started screaming like never before. She was dead.

For two days I sat curled up in the recliner and muttered to a stream of visiting relatives that I done something wrong by accident. Her blood covered my mouth and hand until my husband washed it off of me two days later. With all of the tests performed in utero and after she was born, and with her seemingly perfectly happy appearance, I knew that I must have done something wrong. Maybe she smothered to death on my breast?

I found out from the coroner that Cora had a congenital heart disease, sometimes abbreviated CHD. I felt slightly relieved. At least I knew I didn’t kill my baby.

I rushed over to tell my husband. “Congenital heart disease,” I fumbled over the new phrase. He asked me for details. What did that mean? How common was it? Could we have done anything?

That’s when I realized I’d never heard of congenital heart disease. I had no clue what any of it meant. I hadn’t even pushed the coroner for details when she told me Cora died of a CHD and that her little heart was “a mess” because I had been relieved to know I hadn’t killed her.

I took to social media and was soon connected to hundreds and then thousands of people who either had a congenital heart disease, or knew someone who did. Turns out congenital heart disease is the number one birth defect, kills more children than all forms of childhood cancer combined, and a simple test might have detected Cora’s CHD, a pulse oximetry test conducted between 24 to 48 hours of age on a newborn.

This was only two months ago. I’m still new on my road to saving lives.

Today marks the start of Congenital Heart Disease Awareness Week, Feb. 7 to 14, 2010. I’m working night and day this week spreading Cora’s Story. Because, I wish I would have been aware of CHD. I don’t want any other mother to learn about CHD from the coroner.

 Help me spread her story.

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, http://www.facebook.com/pages/Coras-Story/224020688142?ref=nf 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.

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