
I have been volunteering, then working and advocating for the American Heart and Stroke Association for 11 years. My journey started as my Dad's, then my Mom's, my son's, then mine. Today it became so much more.
Today it started with a Rally on the Hill for the National Institute of Health to garner funds. There has been a lot that has impacted the NIH but the sequester has had a huge impact on the jobs and the US economy. The NIH has been greatly effected. So lets make a change.
I am heart patient, advocate and survivor but the the NIH does so much for so many. Cancer, diabetes,St Judes, HIV....all have been impacted and changed by the research and development of the NIH. Change is only made by the vision of those that wish to see what can't be seen yet.
I started out the day with Susan Day, a nurse from Kansas who just touched me with her spirit and kindness. I the spent the day with Christina Wooley, Mrs Oregon International 2013. What a true spirit and beauty inside and out. She advocates for her Nana and traveled from Oregon to do so.
The Rally was amazing and inspiring. Cokie Roberts was the emcee and Myney Terney was a speaker and she spoke about Speak Up to Cancer.
Out of everything today and us preparing to speak to congress this is what spoke to me most...
This morning after presentations and the Nancy Brown spoke, AHA CEO (a hero to me), questions comments were welcome. One of the constituents stood up to share why she was there. She lost her son two years ago as a toddler as she helped to pass the pulse ox act in WV.
Clarity.
This is why I am here. My heart broke. She and her son. True heroes.
Pulse Oximetry – Congenital Heart Defects Screening for Newborns
As the number one killer of infants with birth defects, congenital heart defects take a significant toll on families across the country. Fortunately there is non-invasive screening test that helps identify newborns at risk for heart defects and potentially save their lives. The test, pulse oximetry, or pulse ox, consists of sensors placed on a baby's hand and foot to check blood oxygen levels. If their levels are too low, additional tests may be conducted that aid in detecting critical or possibly life-threatening heart defects that might otherwise go undetected. New research suggests wider use of pulse ox screening would help identify more than 90 percent of heart defects.
In September 2011, U.S. Secretary of Health and Human Services Kathleen Sebelius suggested that critical congenital heart defects screening be added to the “Recommended Uniform Screening Panel” for newborns before they are released from a hospital or birthing facility. To achieve this goal efforts are underway across the country to enact pulse ox screening policies that will allow babies with heart defects to live longer and fuller lives. As a result of these efforts New Jersey, Maryland, Indiana, Tennessee and West Virginia have already passed laws requiring newborns to have pulse ox screenings prior to being discharged from the hospital. In New Jersey, just hours after their law took effect, a newborn’s life was saved.
The American Heart Association will continue its efforts to educate key decision makers and the public about the critical role pulse ox screening plays in improving early diagnosis for newborns. We will also work to increase funding for support and educational services, enhance scientific research in this area, and expand access to quality care for the nation’s children.
To learn more about congenital heart defects and pulse ox screening policies in your state, visit
You’re the Cure today!