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!
After Chloe was born and I started learning more and more about CHD (America’s #1 birth defect), it changed me. One way in particular – when I should have felt joy as my friend is sharing news that she’s pregnant, I instantly felt fear. After her 20 week ultrasound, I wouldn’t ask “Did you find out the gender?”. Instead, I would say “Did you ask them if they could see all four chambers of the heart?”. I would call the hospital where she planned to give birth and ask if they currently screened every baby with pulse oximetry. Instead of looking for dimples or a head full of hair, I would analyze the photos of her newborn baby for blue skin. I would send a text message saying “Congrats on your newborn! Don’t forget to ask for a pulse oximetry screening!”. What a buzzkill, right?
I’m sure to them I sounded neurotic and morbid and extremely annoying, but I didn’t care. It still haunts me to this day – the thought that we would’ve been sent home with Chloe and her four undetected heart defects and who knows what would have happened. I’ve read too much and heard too many personal stories and tragedies to stand back and not try to educate and help other families.
I learned earlier this year that the hospital where Chloe was born (Fall, 2008) added mandatory Pulse Oximetry Screening to their newborn checklist in 2010. I was told they were inspired by Chloe’s story to make that change. Hearing that, and finally having Chloe’s Law passed, it’s actually a comfort knowing that all Missouri hospitals will be adding this easy, painless, fast and live-saving screening to their list. Maybe I can be slightly less annoying now….probably not!
So many people have fought with me and helped get Chloe’s Law passed. I could not have done this without my district House Representative Rick Brattin (with JaCinda Martin), Senator Dan Brown, Dr. Drake (Chloe’s cardiologist), March of Dimes (Trina, St. Louis), American Heart Association (Jace Smith & Christy Dreiling), Penman & Winton Consulting (Scott & Anne), Department of Health (Ellie), American Academy of Pediatrics and many more!
And I’m of course grateful to all of my family, friends and supporters who have encouraged me and cheered me on, and especially those who have taken the time to write their House Representatives and Senators and asked them to support Chloe’s Law! They really do listen to your letters, emails and phone calls!
I was able to listen to the live Senate debate as the amazing Senator Brown sent Chloe’s Law to the Governor’s desk. It was an amazing moment! I can’t wait to share this journey with Chloe, when I can show her the scrapbook I’ve made for her and she can truly understand the importance of the life-saving law that she inspired.
I’ve said it before – Chloe inspired the law, but it’s not for her. It’s for all of the heart babies yet to come. For the babies born with CCHD that go undetected through the ultrasounds and the examinations at birth. Chloe’s Law is for them.
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