Guest Blogger Kelly Manz describes why having Chloe’s Law finally reach the Governor’s desk is the ultimate Mother’s Day gift!
When I began this journey in 2009, I had no idea what I was getting myself into. I was on a mission and I jumped in head first! I started with baby steps and read what I could about the Missouri Government. Each year, I learned more and more about the bill process and all the political stuff that goes with it!
So much has changed over the last four years. During my first two attempts with Chloe’s Law, a few major organizations actually fought against me. There were many research studies out there discussing the benefits of Pulse Oximetry Screening, but it hadn’t received the recognition yet as a reliable way to screen for CCHD. Pulse Oximetry Screening will not detect all CHDs, but it will detect the most critical (referred to as CCHD) which, ironically, often go undetected until several days or weeks after birth.
That changed in Fall 2010 when the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children sent a letter to Kathleen Sebelius and voted to add Congenital Heart Defects to the newborn screening panel. Receiving federal support was a huge turning point.
It took a few years, but I finally got the support and backing I needed to get this done. Add politics into the mix and well, four years may not be THAT long….(Bill recap: 2010 – HB1604, 2011 - HB838, 2012 - HB1058)
Since I began my fight for Missouri to make pulse oximetry screening mandatory on every newborn baby throughout the State before discharge from the hospital, many other families have since reached out to their House and Senate and have gotten their own Pulse Oximetry Screening Law passed (or an Executive Order has been issued or it has been added to their Newborn Panel as a regulation or rule change, depending on the State). We are now a huge network of families, a movement if you will, fighting for the same cause nationwide! I love hearing updates as each State gets their bill passed (approximately 20 so far!) and there are still States with bills currently in the works for 2013 (approximately 19) and I can’t wait to hear their success stories as well!