Little Miss Darcie Do Changing the World.

I would like to work towards getting a law passed that requires all hospitals to do mandatory screenings for congenital heart defects in newborns. This would be similar to the law that required hospitals to perform newborn hearing screenings to identify children who are Deaf or hard of hearing. Before the mandatory newborn hearing screenings were passed many children with hearing problems slipped through the cracks and missed important early intervention opportunities. The same thing is happening with children who are born with heart defects. These babies are sent home as healthy. Sometimes this has deadly results. By the time symptoms develop it may be too late for treatment or treatment isn't as successful. 

Congenital heart defects occur in 7 to 9 of every 1,000 live births in the U.S. The challenge is that a baby can be born with a heart defect and look totally normal and healthy. If you can identify and treat kids before they get too sick they will have a better chance at a successful outcome. 1 in 6 babies who die from congenital heart defects are not diagnosed. These cases that are missed are thought to cause 200 infant deaths each year. An estimated 2,000 babies a year could be diagnosed and treated sooner if pulse oximetry screenings were used. This is an inexpensive, non invasive test that is easy to perform and it will help save lives. 

My baby girl has been diagnosed with a congenital heart defect. She was not tested in the hospital even though she is in a high risk group for heart defects. We were told she was healthy and sent home. Luckily I knew something was wrong and asked the doctor to check her heart again. We found her heart defect and are now waiting for open heart surgery. However, she was already two months old when we got her diagnosis. We were lucky to find it while she was still in the early stages of heart failure. Not all children with heart defects are so lucky. 

I am attaching links to a few sites that discuss the pros and cons of the newborn screenings for these defects so you can read about it for yourself.  If you support this idea and can help in any way please let me know. I have contacted a friend who is running for the Oklahoma house of representatives and he has agreed to help me write legislation to present during the next session.  

I want to share Darcie's story. It may help some other family. Please feel free to re post this information. 

                 Darcie Do and her siblings/best friends, Taylor, Cameron and Kaylynne

http://articles.latimes.com/2011/aug/21/health/la-he-heart-screening-20110822

http://www.newstimes.com/local/article/Looking-for-a-baby-s-heart-problems-3550381.php