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Governor Signs Newborn Heart Defect Screening Bill

On Monday March 3rd, Governor Susanna Martinez signed a piece of life saving legislation into law in New Mexico.  House Bill 9 requires all birthing facilities to perform pulse oximetry screenings on newborns prior to discharge from the hospital.  This legislation moved quickly through a very short 30 day budget-only session. 

Late in January, Governor Martinez sent a message to the legislature asking them to work on legislation related to Critical Congenital Heart Defects.  This prompted the introduction of House Bill 9.  The bill made it through one house committee, the house floor, 2 senate committees and the senate floor unanimously.

Thanks to all YTC advocates for taking action and helping this bill become law! 

Want to help spread the good news?  Share this image on Facebook!


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Our #CHDweek Message: Pulse Ox Saves Lives!

Critical Congenital Heart Disease (CCHD) accounts for 27% of infant deaths that are caused by birth defects - the most common birth defect in the U.S.  Early detection is key, which is why advocates across the country are speaking up for a simple, life-saving test for all newborns. 

Pulse oximetry screening is a low-cost, highly-effective, and painless bedside test that can be completed in as little as 45 seconds at less than $4 per baby.  Already this year, Illinois, Michigan, Missouri, New York, and South Carolina have joined the growing list of nearly 30 states in which all newborns will be screened for CCHD using a pulse ox test.  Most other states are either working to pass legislation this year or are developing rules to carry out previously enacted legislation.  Just within the last couple weeks, New Mexico’s pulse ox bill passed out of the House of Representatives and is on its way to the Senate- and in Virginia, advocates are now urging the governor to sign the state’s pulse ox bill into law! 

If we can save a child’s life, shouldn’t we?  The American Heart Association is proud to work with partner organizations committed to the health of our nation’s littlest hearts – and you can help!  Advocates like you are sending messages, attending lobby days and speaking out across the country.  But our work is not done until every parent can take their baby home from the hospital knowing their heart is healthy.  During Congenital Heart Defect Awareness Week (February 7th-14th), help us make some noise in support of mandatory pulse ox testing in every state by SHARING the following resources with your Facebook friends and Twitter followers, using the hashtag #CHDweek:

  1. Pulse Ox Valentines: On February 14th, show the love for pulse ox screenings that help identify broken hearts! 
  2. Video: A 45 Second Test That Can Save a Life
  3. AHA CEO Nancy Brown’s Huffington Post article: Too Many Babies Are Born With Heart Defects; Simple Test Helps Diagnosis
  4. Fact Sheet: Precious Information- Pulse Ox Screening for CCHD
  5. AHA Congenital Heart Defects Information & Resources

 We want to hear from you!  Are you or a loved one a CHD survivor?  Tell us your story in the comments below…

(Please visit the site to view this video)

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Pulse Oximetry is up for the final test

You might remember House Bill 1347 by Representative Dan Kirby and Senator Kim David; a bill that passed the Oklahoma Legislature during the 2013 legislative session.  This new law will ensure all newborn babies receive a simple, non-invasive pulse oximetry screening before leaving the hospital.  This bill passed the legislature with unanimous support and is now at the final point in the process before full implementation.

The bill commissioned the Oklahoma State Department of Health to develop administrative rules to oversee the implementation of the screening.  The draft rules are now open for public comment. From now until November 1st, anyone that lives in the state of Oklahoma can submit written comments urging the Board of Health to approve the rules.

Once the comments are collected, a report summarizing the comments will be presented to the Board of Health for their final approval of the administrative rules.  If you have any questions about the regulatory process, or would like to submit public comments in support of pulse oximetry, please contact Naomi Amaha at Naomi.amaha@heart.org.

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Advocate Testifies about the Importance of Newborn Screenings

Great news for congenital heart defect advocates! On Thursday, September 26th You’re the Cure and March of Dimes advocate Joye Mullis testified in front of the U.S. Senate Health, Education, Labor and Pensions Subcommittee on Children and Families about the importance of pulse oximetry screening for all newborns. 

Joye knows the importance of this screening first hand. As soon as her son Ethan was born, a quick thinking nurse detected something wrong and suggested he undergo a pulse oximetry test. This quick and painless test revealed that Ethan had a pulmonary atresia with a ventricular septal defect and needed extra care. After many months in the hospital, Ethan is a now a healthy boy, but his outcome could have been different if he was not screened. 

Joye joined witnesses from other organizations pressuring the Senate to pass the Newborn Screening Saves Lives Reauthorization Act, which helps states with their newborn screening programs. The legislation is sponsored in the Senate by Senators Kay Hagan (D-NC) and Orrin Hatch (R -UT) and still needs to pass the Senate before moving to the House. 

In addition to support at the federal level, many states around the country have required hospitals to screen newborns for congenital heart defects. With one in one-hundred newborns having a heart defect, quick and painless tests like pulse oximetry are crucial in detecting these conditions.

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Colleen and Lucas Wilson - the case for pulse-ox screening

When Lucas Wilson was born, his doctor had a strange feeling that something wasn’t right. Lucas was born with the standard indicators of a healthy baby: eights pounds, eight ounces, ten fingers, and ten toes. However, Lucas’ doctor took one look at him and knew that something was wrong.

Lucas was born with a rare heart condition that neither his doctors, nor the hospital, were prepared to address. By the time the diagnosis was made more than 24 hours had passed and Lucas' kidneys had begun to shut down.  Lucas was air lifted to a hospital in Oklahoma City, where he underwent the first of three heart surgeries at 6 days old. 

As Lucas grew older his pulmonary and vascular pressures increased causing lymphatic fluid to leak into his lungs and eventually blocking off the airway as he coughed.   Surgeons created a hole in his heart that relieved the pressures and he is one of only a few children to survive this rare pulmonary condition. 

Lucas is currently doing well but will face a heart transplant at some point in the future. His parents call Lucas their “miracle baby” and are thankful for every day they have with him.  This past legislative session Lucas' mom, Colleen, as well as Lucas, were instrumental advocates who helped to ensure that a bill requiring Pulse- Oximitry Screenings for newborns passed through the Oklahoma State Legislature.  They were successful, not only in assisting with the passage of the bill, but in helping to save the future lives of newborns in their state who may be born with congenital heart defects.

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Oklahoma Session in Review


On May 24th, the Oklahoma Legislature officially adjourned for the year. This legislative session saw numerous policies that directly impact the mission of the American Heart Association. This year was unlike any other and included many challenging issues.

Click here to thank lawmakers for their work this session and encourage them to keep heart and stroke issues at the forefront of their agenda!

Now I would like to share some successes. With your help and collaboration with fellow health advocacy organizations, the following legislation was addressed:


-Newborn Heart Defect Screening (Pulse-Ox): HB 1347 by Representative Dan Kirby and Senator Kim David ensures that pulse oximetry screenings are now required for all newborns prior to leaving a birthing facility. This will reduce death and disability caused by Congenital Heart Defects.

-Worksite Wellness: HB 1113 by Representative Wade Rousselot and Senator Earl Garrison authorizes county commissioners establish wellness programs for their employees. Worksite wellness programs have proven to reduce key risk factors for heart disease like obesity and tobacco use while lowering health costs.

-Smoke-Free Workplaces: SB 501 by Senator Frank Simpson and Representative  Pat Ownbey designate all buildings and properties owned by public entities as nonsmoking. This will ensure more people are protected from secondhand smoke at the workplace.

-Health Care Access: SB 640 by Senator Brian Crain and Representative Dave Cox, which did not pass, began a discussion on how to develop a plan to expand Medicaid and preserve the Insure Oklahoma program.

We are already planning for the 2014 legislative session by initiating conversations with key lawmakers and stakeholders to ensure a successful session. Take a moment to let lawmakers know that we are thankful for their support over the past few months. 

I want to thank you for your support this session. Your emails, phone calls, and stories ensured that the American Heart Association’s public policy agenda was consistently represented at the Capitol.

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Saving Lives Through Detection

You’ve helped us pass some lifesaving legislation this year and now we need your help to thank Lawmakers for their work, especially our champions who did a lot of heavy lifting within the legislative process. 

Thank Arkansas lawmakers for passing Pulse-Ox Newborn Heart Screenings!

Elected officials hear from the general public all the time, but rarely are they thanked for a job well done. You can help us cultivate positive relationships and empower members to continue to pass lifesaving measures.

HB 1468 will help reduce death and disability from congenital heart defects by requiring a simple noninvasive test that helps with detection. This test will help catch newborns with a critical defect and allow medical professionals to put a plan in place to treat the defect immediately.

It will also help catch the cases that may have gone unnoticed for years or decades. The bottom line is that HB 1468 will reduce the death and disability caused by heart disease

I’d like to highlight a few of the main players who made this new law possible including all the authors and co-authors:

Representative Kim Hammer
Representative Charlene Fite
Representative Andy Mayberry
Senator Jeremy Hutchinson
Senator Jonathan Dismang

And a special THANK YOU to Governor Mike Beebe for signing the legislation into law and for the public bill signing that brought families and individuals touched by Congenital Heart Defects at this important occasion.

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Pursuing Pulse Ox Around the Country

All across America, You're the Cure advocates and American Heart Association staff are working to ensure newborn babies are screened for congenital heart defects before they leave the hospital. A quick, painless screening using pulse oximetry- really just like a Band Aid placed on the toe or finger- can help alert doctors of a heart defect and ensure babies receive timely care. Congenital heart defects are the #1 birth defect, affecting 1 in 100 babies. Here's a look at just some of the incredible work happening around the country:

 Minnesota: American Heart Association volunteer and Minnesota Representative Nick Zerwas shared his personal story of living with a congenital heart defect (CHD) during an American Heart Association Lobby Day. Rep. Zerwas is a co-sponsor and champion of Minnesota's Pulse Oximetry bill.  Lawmakers, volunteers and the public saw firsthand how easy (and painless) the pulse oximetry test is when the test was given to baby Oliver during the Pulse Ox Demo and Press Event. 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: http://www.kare11.com/news/news_article.aspx?storyid=1010784

 

 

North Carolina:  Greg Olsen, tight end for the Carolina Panthers, joined more than 60 You’re the Cure advocates gathered for North Carolina’s state lobby day to talk about the importance of pulse oximetry newborn screening and other important AHA issues. Many of the advocates were families with children with congenital heart defects, including Mr. Olsen. He testified that day in front of the House Health and Human Services Committee and the bill requiring pulse oximetry screening for newborns was passed unanimously.  Following the hearing, lawmakers joined Mr. Olsen and advocates at a news conference to discuss pulse oximetry screening. 

 

Oklahoma: On February 12, an amazing group of advocates attended a “Pulse-Ox” Lobby day at the Oklahoma Capitol, including mothers that had lost children due to undetected heart defects, kids and families currently living with congenital heart defects, and medical professionals that specialize in pediatric care.  Thanks to their efforts, the pulse-ox bill was passed by the House Public Health committee that day!  A similar bill has also been approved by a Senate committee, and both bills await a floor vote.

 

 

Pennsylvania: Tara and Wyatt Shaffer from State College, PA, joined 70 American Heart Association advocates at the state capitol to meet with lawmakers and participate in a press conference on the importance of pulse oximetry screening for newborns.  Nine-year-old Wyatt was born with a congenital heart defect.  His mother Tara told the moving story of how her son’s doctor luckily identified the defect before they left the hospital.  Had pulse oximetry screening been performed, that would have alerted doctors that there was a problem.  While Wyatt’s story ended happily and he’s now an active fourth grader and avid Heart Walk fundraiser, other families have not been so lucky. Volunteers came back from their meetings with elected officials energized and committed to making a difference by sharing their personal stories

South Dakota: A bill to ensure all newborns are screened for critical congenital heart defects is on the governor’s desk awaiting signature!  Advocate and bill sponsor testimony was impactful in moving this bill seamlessly through both chambers of the South Dakota legislature.  We look forward to the governor's support of this life-saving measure.

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State Spotlight! CA Passes Heart Defect Screening Law

California recently became the 9th state to pass legislation that will benefit thousands of newborn babies starting July 1, 2013.  AB 1731 ensures that every California newborn delivered in a birthing facility will be given the pulse oximetry test to identify critical congenital heart defects (CCHD).  Assemblyman Marty Block sponsored AB 1731, with the support of the American Heart Association and the March of Dimes

 California You’re the Cure advocates voiced support for this life-saving bill every step of the way.  From over 80 meetings with legislators at California Lobby Day and 12,000 emails to committee members to daily delivery of personal stories before a key committee vote and phone calls to the Governor to push for his signature, it was the grassroots who made this happen.  Special thanks to the following survivors and moms for sharing their personal stories with lawmakers: Rayme Elliott, Hilary Gushwa, Kristen and Tyler Mateson, Melissa Murphy, Gigi Olivo, and Nicole Wells.

As the nation’s leading birth defect, congenital heart defects take a significant toll on families across the country.  Catching a CCHD condition before the baby is discharged from the hospital increases his/her chances of a longer, fuller and higher quality of life. New research suggests wider use of pulse ox screening would help identify more than 90 percent of heart defects.

 Pulse oximetry is a non-invasive test that checks blood oxygen levels and low levels indicate a potential life-threatening heart defect that might otherwise go undetected.  AB 1731 adds pulse oximetry to the newborn screening panel.

Congratulations to our California You’re the Cure team on this important, life-saving policy win!                  

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Asher Griffin, Mississippi

Asher's mother, Anna, shares his personal story as a congenital heart disease survivor.

Congenital heart defects (CHD) are one of the most common birth defects in the United States, and the leading cause of birth defect related deaths in children under one year.  This is a very personal issue for me and my family as my son, "Brave Heart" Asher, was born with a complex congenital heart defect called Tetralogy of Fallot with Pulmonary Atresia. He also had an Atrial Septal Defect and hypoplastic branch pulmonary arteries, 7 heart defects total.
We were unaware of Asher’s heart defect during pregnancy, so we were shocked and heartbroken when our sweet baby boy was born fighting for his life.  Although we live in Gulfport, Asher courageously endured two open heart surgeries and three heart catheterizations before his 1st birthday at Children’s Hospital of Philadelphia.  He had a fourth heart catheterization at 2 years old.  He also has developmental delays due to his heart surgeries and a PVL brain injury.  Asher’s CHD will require life-long specialized cardiac care, along with heart surgery/procedures as he grows or develops complications, but we courageously press on and believe in miracle breakthroughs in medical research.

Asher Today at 3 Years Old


There can be no adequate description of the emotional, physical and financial toll this can take on a family.  Fortunately, there is help and promising research, but much more needs to be done.  Without research, these precious children have little hope since there is no known cause for CHD and no cure.  Research for congenital heart defects is vital to making a better life for children and adults with these defects.  Through early detection and diagnosis, better treatment options, and research to determine the cause of these defects, these children will have a far better chance at living longer healthier lives.

Our lives drastically changed the moment Asher was born with a broken heart, but we are stronger, love deeper and have faith that can move mountains because of this incredible trial.  Our faith in an amazing God and His powerful promises of healing give us peace and hope for this journey.  He can take broken pieces and make masterpieces!  Be Brave and Keep Going!

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