Congenital Heart Disease Awareness Week

February 7-14th is Congenital Heart Disease (CHD) Awareness Week. Why is it so important to me? CHD affected a great twitter friend of mine–we were pregnant together and she lost her healthy baby at 5 days of age due to undetected CHD, just a few weeks before Ryan was born. It really hit home for me.

What is CHD?
Considered the most common birth defect worldwide, it is the leading cause of birth defect related deaths.  One in 100 babies are affected. There are different types of CHD and the defects of the heart or blood vessels occur before birth, while the fetus is developing in the uterus. These defects can occur in heart valves, in the walls between the atria and ventricles, or in heart muscle.

How is CHD detected?
It’s usually first detected when a heart murmur is heard. Then more tests will be run, such as a chest xray, MRI and EKG. For babies, there is a non-invasive, fast, easy and cheap option: a pulse oximetry test. It doesn’t detect all CHDs, but it’s a great start. Sadly, they’re usually not done routinely on newborns. SO ASK FOR IT! After Ryan was born, I asked for it and got it. The nurse had no idea why I would want to test for CHD or why a pulse ox test would help. How sad is that? We need to work much harder to raise awareness (and work to raise money to fund more research)!

More information
Check out The Congenital Heart Information Network–they have information on Awareness Week, a fact sheet, ways you can help, and a list of participating cities–find something in your area!

What can you do?
There are many ways to get involved, doing as much or as little as you’d like. Just reading this post and passing on the information to one person is a start! Have pregnant friends? Make sure they ask for the pulse ox test at the hospital. Remember, CHD affects 1 in 100!

Tomorrow I am hosting a giveaway on this blog for a pink baby gown in honor of my friend who lost her sweet baby girl to CHD. Please come back and check it out for more ways to get involved in your community!! They’ll give you extra entries to the giveaway!

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