Congenital Heart Defects (CHD)

We have exciting news to share from Springfield on HB 2661, the pulse ox bill - last week the bill passage out of the Senate Public Health Committee 9-0!  Now the bill moves forward to be voted on by the entire Senate.  We need your help to urge your Senator to vote YES and pass this bill successfully out of the Senate.  Take action now!  

H.B. 2661 would ensure all newborns in Illinois are screened using pulse oximetry for critical congenital heart defects prior to hospital discharge.  Nearly one in three infants who die from birth defects has a heart defect, with critical congenital heart defects occurring in roughly 8 out of every 1,000 live births.  Ensuring that all newborns are appropriately screened for heart defects before being discharged from the hospital via pulse oximetry is simply the right thing to do.   

For more information on this bill or to get involved further in helping to make it law, please contact Anne Simaytis at anne.simaytis@heart.org 

Guess What?
The House just passed Pulse Ox with a vote of 88-4! Thank you to everyone for keeping the momentum going!  They heard us loud and clear…but even though we are very close to ensuring that all Iowa babies are screened for congenital heart defects, it’s not a done deal yet. 

We have 1 MORE STEP! 

The Governor must sign the bill!  The Pulse Ox legislation was amended onto the Standing Appropriations Bill which will be negotiated in Conference Committee.  Pulse Ox language will remain in the bill because the same version passed both chambers successfully.  However, since it is an appropriations bill, the Governor will have 30 days after final adjournment to sign the bill and it is subject to line-item veto. 

Again, thank you so much for all of the support!  We will keep you posted and ask that you continue your advocacy as we now turn our attention to the Governor.   

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!

Read the rest on Kelly's Blog!

American Heart Association volunteers from around the state gathered in Madison on May 7th for a day of advocacy.  Attendees spent the morning learning the issues then hit the Capitol for meetings with lawmakers to discuss Senate Bill 104 and Assembly Bill 111, legislation that would ensure all newborns in Wisconsin are screened for congenital heart defects prior to hospital discharge. Since May is American Stroke Month, we also educated lawmakers on how to recognize and act if someone is having a stroke.

You can click here to watch a news segment on the event, and be sure to check out our Facebook page at www.facebook.com/AmerHeartWisc to see all the great photos from the day!  Thanks to all of our advocates who made the trip to Madison - You're the Cure!

The following is an update on the pulse ox hearing from Justin Bell:

The Pulse Ox Newborn Screening Bill (H.F. 483) had its first hearing yesterday in the House HHS Policy Committee - where it passed out unanimously! The bill will ensure that every newborn is screened for Critical Congenital Heart Defects(CCHD) prior to being discharged from the hospital. The screening, called Pulse Oximetry, is fast, non-invasive and cheap. It can detect Heart Defects that are not symptomatic otherwise. American Heart Association volunteers Jolene Tesch (Executive Director of Lasting Imprint) and Dr. Ted Thompson (Professor of Pediatric Cardiology) testified in support of the bill as did State Rep. (and AHA Board Member) Nick Zerwas – himself a CCHD survivor.

KSTP (ABC channel 5) also covered the hearing.  Check out the news story here!

A big thanks to the nearly 50 advocates who came out to our Heart on the Hill at the Capitol in St. Paul yesterday.  The entire day was a HUGE success!

We were able to visit with nearly 90 legislators, delivering important messages and personal stories on our three priority issues – funding the Statewide Health Improvement Program (SHIP), funding Safe Routes to School and screening newborns for heart defects using pulse oximetry! 

We were able to showcase SHIP dollars at work to lawmakers passing through the Rotunda thanks the great displays from SHIP grantees around the state.  A special thanks to the following SHIP grantees who participated  -  Little Huskies Daycare, Ramsey County, Smoke-Free St. Cloud, Sibley East School Garden and Hopkins Schools.  Also, a big thanks to the Minnesota Bike Alliance for providing materials on Safe Routes to School.  And thanks to the University of Minnesota Pharmacy students for providing blood pressure screenings to lawmakers, staff, volunteers and the public.

Additionally, lawmakers, volunteers and the public saw firsthand how easy (and painless) the pulse oximetry test is when Dr. Jamie Lohr, professor of pediatric cardiology at the University of Minnesota, administered tested baby Oliver during the Pulse Ox Demo and Press Event. Ed Ehlinger, Minnesota Commissioner of Health, was also onhand to declare, on behalf of Governor Mark Dayton, Feb. 7 to Feb. 14 Congenital Heart Defect Awareness Week! The demo and pulse ox bill received some great media coverage highlighting Representative Zerwas and his personal story of survival.  Check out the clip from KARE 11 here.

We were also very excited to have the first and fifth grade classes from The Blake School attend the event!  The fifth graders are learning about government and were able to see it in action, while the first graders were there to encourage lawmakers to support the pulse ox bill in honor of their classmate who has a congenital heart defect.  The group even delievered Valentine's to Governor Mark Dayton thanking him for his support of screening newborns for critical congenital heart defects.  Thanks to Twin Cities Board Member, Dan Spiller for making the school's participation in the event possible!

Couldn't attend the event?  It's not too late to send a message to your legislators letting them know you support the issues!  Take action here!

Make sure to check out the great photos from the event on our Facebook page here.

Students at Blake Elementary School in Hopkins have been following the story of one of their classmates, who has a congenital heart defect and is currently on a transplant list. On Thursday February 7th – American Heart Association Government Relations Director, Justin Bell visited the school and talked to the first and fifth grade classes about how a bill becomes a law and about a bill that AHA is working on this session in MN to require all newborns to be screened for Critical Congenital Heart Defects using a simple and non-invasive test called Pulse Ox. The classes will join the Heart Association next Tuesday Feb. 12 at the State Capitol for Heart on the Hill where they will tour the Capitol, meet some legislators, see a demonstration of a Pulse Ox test on a newborn and deliver thank you Valentines to Governor Dayton for his support of CCDH screening.

Today kicks off Congenital Heart Defect Awareness Week (Feb 7-14). Governor Dayton has recognized the week with a state proclamation and on Feb. 12th, we will celebrate Heart on the Hill Lobby Day, advocating for better screening for congenital heart defects.

Check out the great story below on the Pulse Oximetry bill, a bill that would require all Minnesota newborns to be screened for critical congenital heart defects using the noninvasive pulse oximetry test.

For every 100 babies born in Minnesota, one has a congenital heart defect. Advocates are seeking to catch such problems before babies are sent home from the hospital.

A bill carried by state Rep. Patti Fritz, D-Faribault, and supported across the aisle by Rep. Nick Zerwas, R-Elk River, aims to add a Pulse Oximetry test to the panel of mandatory newborn screenings.

"You place two sensors, one on the hand and one on the foot, and it measures the oxygen level in the blood in the newborn baby," Zerwas said, "and that helps detect congenital birth defects." Read the rest of the article.

We need your voice!  One of the most impactful ways you can advocate for the American Heart Association is to meet with your legislators. Our Minnesota Lobby Day offers you the opportunity to do just that!   

REGISTER NOW!

Tuesday, February 12, 2013, 8 a.m. to 4 p.m.

Join other advocates to speak with Minnesota legislators in a strong, unified voice about the importance of fighting heart disease and stroke. Attend workshops and training and then put your skills to the test when you meet with your state legislators about: 

1. Support sustainable state funding for the Statewide Health Improvement Program.
2. Increase the opportunity for children to be physically active before, during and after the school day. Support funding for the State Safe Routes to School program.
3. Require that all Minnesota newborns are screened for critical congenital heart defects using pulse oximetry.

Breakfast and lunch included. Students are also encouraged to attend this daylong event. There's no cost to attend but advance registration is required. 

Register today at: Heart on the Hill 2013. For questions, contact Ngia Mua at ngia.mua@heart.org or 952-278-7934.

Cole Klein, 10, was born with a serious congenital heart defect that wasn't caught until he suffered congestive heart failure at 53 days old. His mother, Tiffany Mytty-Klein, explains why she believes that a screening at birth could save kids like Cole from serious complications or death. A measuure in the Nebraska Legislative session could ensure that all newborns are screened for heart conditions before they leave the hospital.  To read more, CLICK HERE.