Over the past 18 months, I've met many families faced with the struggles of congential heart defects. Some of them live everyday in fear of losing their child; some of them live everyday greiving their child.
One of the mothers I met after being thrust into this life is "Cora's Mom". Many of you may know Cora and her mom, Kristine. Cora was born on November 30, 2009. She passed on December 6, 2009. In her mother's arms. While breastfeeding. Cora's medical records revealed a heart murmur, something Kristine never knew until after her daugther's passing. Cora went undiagnosed with a criticial congenital heart defect for one week and died as a result.
After Cora's passing, Kristine, along with a few fellow heart moms, began a valiant grassroots effort to save babies born with critical congential heart defects by way of pulse oximetry testing. Since Zoe's diagnosis and birth, I've joined Kristine and 1 in 100 in their efforts to change the landscape of newborn screens. I began advocating for the screening of all newborns for critical congenital heart defects here in my home state of Arizona.
Thus far, I've met with the Government Relations Director at the AZ American Heart Association, the Executive Director at the AZ American Academy of Pediatrics, had email conversations with the Director of the AZ Department of Health Services and, most recently, filmed a new's story on the culmination of these efforts over the past several months.
Part II of "Crisis = Opportunity" focuses on the amazing opportunity I've been afforded to join other grassroots advocates across the United States in saving lives. A few states are currently screening all newborns, a few will begin mandatory screenings in January, and Arizona will follow suit in the near future.
I hope that my passion and drive for change in the CHD community trickles on to Zoe - because she sure looks cute on TV!
Read the story or watch the link here.
Thank you, Kristine, AnnaMarie and my fellow advocates for educating, advocating and making a difference in the lives of future CHD families.
8 Months Old!
5 years ago