I'm a little late to this, as Congenital Heart Defect (CHD) Awareness Week (February 7-14) is long past. (I'll use the excuse of being caught up in writing my first academic paper in nearly ten years….) However, I didn't want to let that stop me from writing this post.
I've recently come to learn about congenital heart defects. CHDs are the most common birth defect. Nearly 40,000 babies each year are born with a CHD, or nearly 1 in 100 newborns, and nearly 1,800 newborns die from a CHD each year. Congenital means "present at birth." While a CHD may be genetic, more often there is no obvious cause or way the defect could have been prevented.
However, there is a test that can catch some CHDs. While there are no tests that are 100% effective in screening for CHDs, pulse oximetry, a quick, painless, and inexpensive test, can catch those that are associated with low blood oxygen levels. I won't go into the details of the test here, but more information can be found at the website of 1in100, an organization that works to raise awareness of CHDs.
I'm sure you're wondering why this post came about. Back in early December, someone I follow on Twitter mentioned something about wearing pink for someone named Cora. At first I ignored it, but after seeing it from a few more people, I followed some links, and I read Cora’s Story. The long version can be found here, but the short version is that Cora was five days old when she died in her mother's arms while breastfeeding. Cora had an undiagnosed congenital heart defect. I immediately started to follow Cora's mother, Kristine, on Twitter. It was the day before Cora’s memorial service, and Kristine and her family were asking people to wear pink (and post pictures) the next day, in Cora's memory. I read Kristine's tweets backwards. I found the tweet from the day Cora died, the tears streaming down my face. The next day, Ava and I both wore pink (I know, I know, I should have made Jonah and Matt wear pink, too!).
Over the nearly three months since I learned about Cora, I've been amazed by Kristine's strength and passion. She is working hard to make sure that no family has to go through what she went through. She has good days and bad, but she is channeling her grief into building a movement. She has also inspired and motivated me. And on the days when the kids are driving me nuts (and lately, there have been a lot of them), all I have to do is think of her and her sweet Cora, and at least for a moment, the craziness melts away.
I'm writing this blog post because I pledged to Kristine that I would share information about congenital heart defects, as well as Cora's story, with the pregnant women I know, and their families. I want to encourage anyone who is reading this post to pass it along. If you are pregnant, ask for a pulse ox test to be performed on your newborn before you leave the hospital. You can even add it to your birth plan!
For more information:
