proclaim February 7-14th Congenital Heart Disease (CHD) Awareness Week. I explained how my daughter Kaylin was one of the many babies born with this terrible disease and had already been through an open heart surgery, and was heading in for a second sometime this month.
Kaylin was born a statistic. She was the 1 out of every 100 babies born with a CHD. She also became another CHD statistic on December 19th, 2012 when she passed away from her heart defect. I held my baby in my arms as we rushed her to the hospital and she took her last breath. Let me help you understand that this community NEEDS this awareness;
1. Congenital heart defects are the most common birth defects in the U.S.
2. About 1 in 100 babies will be born with CHD this year!
3. Approximately 1.8 million Americans ALIVE today, have a CHD
4. CHD’s claim approximately 3,600 lives a year
5. 40,000 babies annually are born with a CHD in the U.S. alone
6. CHD’s are the leading cause of infant deaths in U.S.
7. Cardiovascular deaths are the leading cause in children 15 and younger
8. More than 50% of children born with CHD’s will require at least one invasive surgery in their lifetime (most require multiple surgeries throughout their lifetime!)
9. Nearly twice as many children die from CHD’s than from all childhood cancers combined
10. 1 penny out of every dollar donated to the American Heart Association goes toward Congenital Heart Research. That’s 1%, yet its killing 3,600 people annually, and 40,000 people are born a year with this disease?! CHD’s are common and DEADLY and yet research is severely underfunded given the prevalence of the disease.
When Kaylin passed right before Christmas, she left behind not only me and her father, but a big brother, and a big sister. She also left behind other family, but most importantly, she left behind a legacy that people from all over the U.S. are following. She captivated so many, and they are still watching her website in hopes that I get this proclamation before CHD awareness week. I refuse to let her passing be in vain. In 9 months she taught us more than I have learned in 30 years, Governor. With all due respect, she was destined for big things… she may have even held your job someday.
Although we cannot stop CHD’s (yet) we can raise awareness, and you have the power to help!! With awareness, and the fact that YOU have helped raise that awareness, we can begin to get the word out for research and possibly funding. We can help parents who may not know about this deadly disease (such as myself, who didn’t know anything until Kaylin almost passed away at 3 weeks old due to undetected CHD’s). And we can begin to help New York advance toward mandating a simple pulse ox test before babies leave the hospital. This is such a simple test, but the results are monumental in the health of our children, and the steps taken to correct if need be.
Please help me raise awareness to help others!
A Heart Mom