CHD Awareness Week

CHD (congenital heart defects) Awareness Week is this week: February 7-14, 2011.

As a mother to a child with congenital heart defects this is near and dear to my heart (and Anna's, literally). I will always remember hearing the words "your daughter has holes in her heart" when she was only a few hours old and how scared those words made me feel. We were very lucky though- although not detected on the numerous level 2 ultrasounds we received during my high risk multiple pregnancy (because of the way blood flows differently through the chambers before birth), Anna's ASD and VSD heart murmurs were detected very early before we were released from the hospital. As a result, we were armed with the knowledge of what to play close attention to- any difficulties breathing, working hard to drink, tiring easily, etc. and Anna was closely monitored by a pediatric cardiologist during those first months until it was determined her CHDs would probably not pose any problems. She does not need to go back to see the pediatric cardiologist again until she is 18 months old.

The problem is that although congenital heart defects are the number-one birth defect and the leading cause of birth defect-related deaths worldwide, awareness is low. Pregnant women are not routinely tested and newborns are not routinely screened for CHDs. Consequently, they often go undetected until sometime after birth. In some cases, they are detected too late. CHDs kill twice as many children as childhood cancer. One in every 125 babies is born with a CHD every year in the United States alone. If you are not aware of Cora's Story, I strongly urge you to visit her site. Cora died suddenly and unexpectedly in her mother's arms of an undetected CHD while breastfeeding. She was only one week old. I can't explain adequately how much her story has touched me. I think of all the things Anna does and is learning and I think about how Cora will never get to do those things, and how Cora's mother will never get to see her daughter grow up like I will watch Anna grow up.

This is something every mother, father or expecting parent should read about CHD. Share it with your friends and family. Help spread awareness of congenital heart defects.