CHD Awareness Week – Cora’s Mom

Did you know that February 7th – 14th is CHD Awareness week? Do you even know what CHD is? I didn’t, until I met Kristine: Cora’s mom.

Kristine has been working diligently to educate as many people as possible since her daughter Cora died in December of 2009 from an undetected Congenital Heart Defect. Kristine is one of the sweetest, kindest, and most amazing women I’ve ever encountered and I’m honored to have her guesting on Mommy Boots today for CHD Awareness week.

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I hung up the phone with the coroner and turned to my husband, “congenital heart disease,” I told him. Our daughter, Cora, had just died suddenly and unexpectedly in my arms while feeding a few days before. We thought she was healthy.

Neither of us had ever heard of congenital heart disease. I tried to explain the best I knew saying I think congenital just meant you were born with it. My husband pulled out our dictionary and our CHD journey began.

Turns out congenital heart disease, or defects or simply CHD is a pretty big deal. Cora wasn’t alone. I read my entire pregnancy. I had stacks of books and belonged to at least three online forums. I memorized a list of things to do to prevent SIDS and even educated my parent friends about infant safety. I never once stumbled across congenital heart defects. I remember the doctors talking to me about screening for things like Down’s Syndrome and other conditions. I remembered Cora’s heel being poked when she was born, full term and weighing almost 9 pounds. The doctor’s listened to her heart, but that was it. I learned from the autopsy report she was born with a murmur. No one told me. The doctor’s probably didn’t think much about it. Murmurs are common. I didn’t think anything could go wrong with her heart.

An estimated 1 in 100 babies are born each year with CHD. Cora’s story is the extreme. In fact, most babies live, and even thrive. But, early detection is key. I don’t want anyone to ever, ever learn about CHD the way I did. I hope you’ll pass on our story.

Congenital heart disease can go undetected until adulthood. Those athletes you hear about dying on the field? Usually CHD.

I know if I didn’t have Cora I’d be tempted to click away from a post like this. The CHD world is a scary and even nightmarish reality No baby should be born with a broken heart.

I hope you’ll help me this week. I hope you’ll help the millions of people living with CHD and the even more millions that love them. We need more awareness so we can fund life-saving research. All it takes is to spend a few moments sharing this post or talking to people about CHD.

You can read more about CHD on Cora’s Story.