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.

Randoms

I just have some random, unrelated things to babble about today, in no particular order.

  • First, thank you for all the amazing feedback and support in regards to my post about anxiety. I feel more empowered than before to take charge and do something about these feelings I’m having.
  • I switched my commenting system to IntenseDebate. Somewhere in the import, some comments got eaten. I don’t know why most of my comments were imported but some were not. I’m frustrated, but for now I’m sticking with I.D. because I like the system. You’ll notice that pretty much all of my posts after December have 0 comments, which depresses me because it makes me look sad and friendless but the comments are there, somewhere, in cyberspace. I re-imported and everything is fine now. Yay!
  • Have you read that Cora’s Law is in the process of being passed in Indiana? Cora’s Law would make it mandatory for newborns to be given a pulse oximetry test to screen for a potential CHD.. And it’s all thanks to Cora and her amazing mother Kristine! I am so proud of Kristine for fighting so hard and tirelessly making sure that Cora continues to save lives!
  • I’m going away for the weekend. Friday through Sunday. I’ll be off on a chorus retreat, barbershopping my butt off. So, internet silence from me. I know you’ll miss me terribly but please try and carry on with your daily lives. This is going to be the longest I’ve ever been away from Nellie. Eeeeeek.
  • My 12 in 11 project is going so well I’ve finished 2 books this month. I read The Hunger Games and on Sunday I bought Catching Fire. I finished it last night. I’m not obsessed or anything. I certainly didn’t look up mockingjay pendants on Amazon or anything like that.
  • Seeing bunches of Blissdom Tweets makes me feel geeky & spazzy and anxious for August, when I will be attending BlogHer ’11. I can’t wait!
  • I tried watching The Kids Are All Right last night with Josh. Great acting, boring as hell. I don’t get why it’s nominated for an Oscar, and I’m usually down with the Oscar Noms. It was like watching someone’s real life, except without any really great drama. I turned it off before we got to the “conflict” of the movie but I read about it on Wikipedia and I was like, meh. Whatev.
  • Abrupt end to the blog post.